Friday, 23 June 2017

Is This Your Neuropathy Too?

Today's post from mytnbclife.blogspot.com (see link below) is part personal blog post and part short but useful description of neuropathy and how it affects you. Many readers will be able to relate to this lady's symptoms and may also gain some useful information from what she has provided here. Worth a quick read.

Pillow Talk aka Peripheral Neuropathy
Posted by Living My New Normal Saturday, June 17, 2017

So once again I've been 'a tossin an a turnin' and not because I'm a 'hunka, hunka burnin love' [insert delirious laughter here] :). My pain is its most intense at night and it seems nothing helps. In a way ... it's become part of my 'new normal', but it's those damn electric shocks, being stabbed with the double-edged sword and walking like I'm in a potato sack with a 50lb weighted sock on my feet that throw me for a loop.

For those unfamiliar with neuropathy I took the liberty of pulling some information from my support group's foundation. If you know anyone also interested in this information, feel free to share. 


Symptoms of Peripheral Neuropathy

 Peripheral Neuropathy symptoms usually start with numbness, prickling or tingling in the toes or fingers. It may spread up to the feet or hands and cause burning, freezing, throbbing and/or shooting pain that is often worse at night. The pain can be either constant or periodic, but usually the pain is felt equally on both sides of the body—in both hands or in both feet. Some types of peripheral neuropathy develop suddenly, while others progress more slowly over many years. The symptoms of peripheral neuropathy often include: A sensation of wearing an invisible “glove” or “sock” Burning sensation or freezing pain Sharp, jabbing, shooting, or electric-like pain Extreme sensitivity to touch Difficulty sleeping because of feet and leg pain Loss of balance and coordination Muscle weakness Muscle cramping/twitching Difficulty walking or moving the arms Unusual sweating Abnormalities in blood pressure or pulse Symptoms such as experiencing weakness or not being able to hold something, not knowing where your feet are, and experiencing pain that feels as if it is stabbing or burning in your limbs, can be common signs and symptoms of peripheral neuropathy. The symptoms of peripheral neuropathy may depend on the kind of peripheral nerves that have been damaged. There are three types of peripheral nerves: motor, sensory and autonomic. Some neuropathies affect all three types of nerves, while others involve only one or two. The majority of people, however, suffer from polyneuropathy, an umbrella term for damage involving many nerves at the same time.

 Three types of peripheral nerves: 

Motor Nerves; Sensory Nerves; Autonomic Nerves;

 Motor nerves send impulses from the brain and spinal cord to all of the muscles in the body. This permits people to do activities like walking, catching a baseball, or moving the fingers to pick something up. Motor nerve damage can lead to muscle weakness, difficulty walking or moving the arms, cramps and spasms. 

Sensory nerves send messages in the other direction—from the muscles back to the spinal cord and the brain. Special sensors in the skin and deep inside the body help people identify if an object is sharp, rough, or smooth; if it’s hot or cold; or if it’s standing still or in motion. Sensory nerve damage often results in tingling, numbness, pain, and extreme sensitivity to touch. 

Autonomic nerves control involuntary or semi-voluntary functions, such as heart rate, blood pressure, digestion, and sweating. When the autonomic nerves are damaged, a person’s heart may beat faster or slower. They may get dizzy when standing up; sweat excessively; or have difficulty sweating at all. In addition, autonomic nerve damage may result in difficulty swallowing, nausea, vomiting, diarrhea or constipation, problems with urination, abnormal pupil size, and sexual dysfunction. 

Article taken from The Foundation For Peripheral Neuropathy: https://www.foundationforpn.org URL to article: 

https://www.foundationforpn.org/what-is-peripheral-neuropathy/symptoms/ Copyright © 2016 The Foundation For Peripheral Neuropathy. All rights reserved.

 
http://mytnbclife.blogspot.com/2017/06/pillow-talk-aka-peripheral-neuropathy.html

Thursday, 22 June 2017

Pain Management Doctors: An Option For Neuropathy Patients?

Today's post from fibromyalgiatreating.com (see link below) is specifically aimed at fibromyalgia sufferers (also a form of neuropathy) but is equally valid for all chronic nerve pain patients. Chances are that if you've been through the mill of standard chemical treatments and little has worked, leading to more pain over a longer period, someone may have suggested going to a pain management doctor. Many people reject this idea out of hand because it seems to suggest that their pain is between their ears and little more and that these pain specialists will only work on your assumed 'depression'. This however, does pain management doctors a disservice because the best ones accept the origins of your pain and work on ways of lessening its impact on your life. They may also issue medication based on your history and prognosis. There are excellent pain managers but there are also those who will treat you as a psychological problem and not take you seriously. It's important that you find a good one and that requires doing your research carefully. This article is a very good guide to doing just that. Worth a read if you feel that a pain management doctor is an option for you.
 

Pain Management Doctors: What They do, How to Find One 
Tiffany Vance-Huffman / June 17, 2017 /

Pain Management Doctors 
 
Have you ever wondered exactly what a pain management doctor does? In other words, how is pain managed? And do they treat fibromyalgia? The American Academy of Pain Medicine explains that “the practice of pain medicine is multi-disciplinary in approach, incorporating modalities from various specialties to ensure the comprehensive evaluation and treatment of the pain patient.” As part of the interdisciplinary approach, the field includes “such specialties as anesthesiology, internal medicine, neurology, neurological surgery, orthopedic surgery, physiatry, and psychiatry.”

Someone who specializes in pain management is trained in evaluating, diagnosing, and treating different types of pain, including acute and chronic pain, as well as cancer pain and any combination of those. An interdisciplinary approach means they address the various reasons whey pain can arise in the first place. Trauma, surgery, accidents, injuries, nerve damage, as well as diseases and various conditions like fibromyalgia are some of the many reasons why pain develops. And then there are those for whom pain arises without any apparent reason at all. So the practice of pain management focuses on treating any and all kinds of pain.



Pain Clinics for Fibromyalgia?

Generally speaking, there are two types of pain clinics. According to the Arthritis Foundation: “One is for procedures, such as injections to deal with specific areas of pain, for example, neck and back pain. The other offers integrative services, which include medications as well as physical, behavioral and psychological therapies,” explains Eric Matteson, MD, professor of medicine and rheumatologist at the Mayo Clinic in Rochester, Minnesota. Recall that fibromyalgia includes widespread pain. Sometimes this can feel localized to certain regions of the body and other times it can feel like your whole body is just one gigantic ache. While you may be aware of certain triggers, more frequently there is simply no specific reason for the pain.

It turns out that a 2009 study found an interdisciplinary approach was effective in treating fibromyalgia symptoms. This was especially true when treatment plans were tailored to the individual needs of the patient. That is the kind of treatment you can get at a pain clinic. “Dr. Matteson says people with disabling neuropathic pain from rheumatic diseases, like peripheral neuropathy associated with lupus or vasculitis [or fibromyalgia], also often benefit from integrative pain management services.” So just what happens at a pain clinic then? 


What Do Pain Clinics Do?

While each clinic may vary in what they offer, the general idea is to create a strategy to treat your pain. Since the concept of pain management has interdisciplinary roots, you are likely to work with a number of healthcare professionals, including non-physician providers. For example, fibromyalgia consists of a wide variety of symptoms that sometimes overlap, but often need to be treated separately. To manage your chronic pain, it may require addressing other symptoms first. So, your providers at a pain clinic may range from psychiatrists and physical therapists to nutritionists and massage therapists.

Whatever the situation, your pain management doctors and caretakers will cater the treatment to your specific needs, circumstances, and preferences. 


What to Look for in a Pain Management Doctor

The overarching philosophy of any pain clinic or pain management doctor should focus on quality of life. The pain from fibromyaliga, for example, is debilitating and reduces your overall functioning in life. While you as the patient will have to play an active role in your treatment, seek a clinic or pain management physician who is genuinely and reputably supportive and caring of their patients.

The American Society of Regional Anesthesia and Pain Medicine emphasizes seeking out a physician who is board certified and who holds subspecialty board certifications in pain management with any of the following: American Board of Anesthesiology, The American Board of Psychiatry and The American Board of Neurology, or the American Board of Physical Medicine and Rehabilitation. They add, “These three are the only board certifications in pain management recognized by the American College of Graduate Medical Education.”

It is also important to make sure they have experience with your condition. So, if you are seeking treatment for chronic pain associated with fibromyalgia, then ask them how they treat other patients in the same or similar situations. Granted, the treatment is specific to each individual, but they can review past examples with you. If they have not treated other patients with fibromyalgia, then you would do well to consider an alternative location or physician who has.

Have you sought treatment for your fibromyalgia symptoms from pain management doctors or clinics? If so, tell us about your experience.

http://www.fibromyalgiatreating.com/pain-management-doctors/

Wednesday, 21 June 2017

Macrophages: Pac-Man Turned Nerve Healer

Today's post from sciencedaily.com (see link below) talks about a new discovery regarding macrophages and their role in regenerating damaged nerves. The article specifically targets nerves that need to regrow and regenerate after nerve-graft surgery but the implications are that macrophages may be able to play a significant role in other types of nerve damage repair in the future. Macrophages are a part of the immune system that normally attack and destroy alien bodies that enter the system and cause disease. They're known as the Pac-Man of the immune system. However, it has recently been discovered that macrophages can also promote nerve healing and as such can prove invaluable in repairing damaged nerves. So now means have to be found to encourage these 'healing' cells to 'surge' and do their work around damaged neurons. Fascinating certainly but still somewhat science fiction for most readers. However, breakthroughs like this in scientific research, will lead to effective treatments in the future. Watch this space.
 
 

Regenerating damaged nerves with 'Pac-Man' cells
Innovative approach nearly as good as surgical nerve transplant

Date: June 12, 2017 Source: Duke University 

Summary:

A regenerative medicine approach to nerve damage may avoid the downsides of nerve graft surgery. Biomedical engineers filled a tube-like nerve bridge with a biological signal to attract undifferentiated cells destined to become pro-healing macrophages, driving robust regrowth of nerves in rats. 


FULL STORY


Credit: Image courtesy of Duke University

 
Very small tubes filled with two kinds growth factors show the regrowth of damaged nerve fibers (central area). On the right is a chemical signal that transforms immune system macrophages into healing cells. On the left is a more robust nerve grown with a signal that recruits undifferentiated cells and makes them specialize as pro-healing macrophages.

Biomedical engineers have found an unlikely ally in the struggle to regrow damaged nerves -- the foot soldiers of the body's immune system.

Macrophages are known as the Pac-Man of the immune system and form the body's first line of defense against invasion -- they indiscriminately engulf and eat most anything deemed a dangerous trespasser, whether it's a bacterium or cellular debris from deceased tissue. Recent research, however, has shown that some macrophages also promote healing.

In a study appearing online the week of June 12 in the Proceedings of the National Academy of Sciences, researchers from Duke University have shown that summoning these pro-healing macrophages can greatly help regrow severed nerves in rats. The approach comes close to equaling the current best treatment -- a surgical transplant using a nerve stripped from another part of the patient's body.

"There's been a long-held view that the best way to regrow severed nerves is to provide all sorts of matrix and growth proteins to coax repair," said Ravi Bellamkonda, professor of biomedical engineering and Vinik Dean of the Pratt School of Engineering at Duke. "We've completely shifted that view by finding new players who have remained behind the scenes. We believe this approach will also have a major impact on regenerative medicine, even beyond this specific application."

The peripheral nervous system includes nerves that run from the spinal cord to the rest of the body. It connects and controls movements, the digestive system, heart, lungs and other organs. When these relatively long cells -- which can stretch for a meter or more -- are damaged or severed, the injury is not easily healed.

The current standard of care, called an autograft, involves surgically removing a less important nerve, like the one running down the back of the calf, and grafting it into the damaged area. But the treatment has several drawbacks. A sensory neuron replacing a motor neuron is not a perfect replacement, painful neuromas can occur at the healing site, the patient loses the function of another nerve and, in the case of extensive injuries, there are only so many semi-disposable nerves in the body to harvest.

Researchers have long been working on an alternative approach using "nerve bridges" to span these gaps. The idea is to introduce a tube filled with growth factors and other goodies across the gap to coax the regrowth of the existing nerve, like luring a dog out of a hiding place with treats. But despite efforts to find the optimal combination of tube material, growth factors, proteins and other helpers, nothing has come close to matching the autograft's success.

Bellamkonda and his group were travelling down this same road until some salamanders lost their tails.

"We saw a study showing that the early presence of macrophages were vital to a salamander's ability to regenerate its tail," said Nassir Mokarram, assistant research professor of biomedical engineering at Duke. "We also knew that rare instances of nerve regeneration were accompanied by a surge of these cells right after the injury occurred. Those two observations gave us the inspiration to see if the same idea could be applied with nerve bridges."

In 2012, Bellamkonda and Mokarram showed that nerve regeneration could be increased in rats by forcing macrophages to become the pro-healing variety that secrete healing compounds. In the new paper, the researchers take their work a step further. Instead of issuing orders to make mature macrophages switch roles, they filled the nerve bridge with a biological signal shown to attract younger, undifferentiated cells destined to become pro-healing macrophages.

"Instead of retraining the demolition and cleanup crew, we hired a new workforce with a future in construction," said Mokarram. "The results were significantly better. This is the closest anyone has ever been to equaling the efficacy of an autograft, and we did it with nothing more than a tube and the recruitment of the body's own immune system."

The researchers next plan to test the approach using a specialized nanofiber material they developed that has already proven better at bridging nerve endings than the tubes used in this proof-of-concept study.

"We're the first group to prove this immunological approach to healing works with nerves in rodents," said Mokarram. "We think this work will open a path to using similar methods in the much more complex and difficult arenas of the spinal cord and brain."


Story Source:

Materials provided by Duke University. Original written by Ken Kingery. Note: Content may be edited for style and length.

Journal Reference:

 
Nassir Mokarram, Kyle Dymanus, Akhil Srinivasan, Johnathan Lyon, John Tipton, Jason Chu, Arthur English, Ravi V. Bellamkonda. Immunoengineering Nerve Repair. PNAS, June 2017 DOI: 10.1073/pnas.1705757114

 
https://www.sciencedaily.com/releases/2017/06/170612153610.htm

Tuesday, 20 June 2017

The Scandal Of The Rise Of HIV On The Edges Of Society

Today's long post from nytimes.com (see link below) is both a personal story and a reflection on the state of HIV today in modern America. That said, it's a situation that's repeated across the world, where HIV is rising alarmingly among poorer and more marginalised groups. For young African Americans, you can also read, young white drug-enslaved Russians, young exploited Asian prostitutes, young black Africans, young jobless urban South Americans and many more. It's a sad reflection on how society fails to take care of its citizens on the margins of society and therefore helps promote HIV among groups with limited options. The fact that one of the figures in this article is also crippled with neuropathy, is almost incidental to the wider picture but one thing is sure, the affluent middle classes who have access to the best health systems, have little idea that this is going on and the New York Times does us a favour by publicising the plight of people without voices of their own. For people who think that HIV, with all its side effects including nerve damage, is now a one-pill-a-day, manageable disease...think again! The article is long and challenging but very well written. Please don't let that put you off reading it - it's an important piece of journalism.

America’s Hidden H.I.V. Epidemic 
By LINDA VILLAROSAJUNE 6, 2017 

 Why do America’s black gay and bisexual men have a higher H.I.V. rate than any country in the world?


Early on a balmy morning last October, Cedric Sturdevant began his rounds along the bumpy streets and back roads of Jackson, Miss. Sturdevant, 52, has racked up nearly 300,000 miles driving in loops and widening circles around Jackson in his improvised role of visiting nurse, motivational coach and father figure to a growing number of young gay men and transgender women suffering from H.I.V. and AIDS. Sturdevant is a project coordinator at My Brother’s Keeper, a local social-services nonprofit. If he doesn’t make these rounds, he has learned, many of these patients will not get to the doctor’s appointments, pharmacies, food banks and counseling sessions that can make the difference between life and death.

Negotiating a maze of unpaved roads in Jackson in the company car, a 13-year-old Ford Expedition with cracked seats and chipped paint, he stopped to drop off H.I.V. medication at a couple’s home. One of the men was H.I.V.-positive, the other negative; they lived in the neighborhood locals call the Bottom, where every fifth or sixth home is abandoned, with broken windows, doors hanging off hinges, downed limbs and dry leaves blanketing front yards. Sturdevant banged on the door of a small house, its yard overgrown with weeds; he knew not to leave the package on the doorstep, where it could be stolen. After a while a young man emerged, shirtless, shrugging off sleep. He had just gotten out of jail. Sturdevant handed him the package, shook his hand and told him to “stay out of trouble.”

Sturdevant drove on another 15 minutes to pick up Marq (a shortened version of his name to protect his privacy), a teenager who was still reeling from the H.I.V. diagnosis he received the previous spring. As they headed to and from a doctor’s appointment and a meeting with a counselor, Sturdevant, slow-talking and patient, with eyes that disappear into his cheekbones when he smiles and a snowy beard, gently grilled him, reminding him to stay on his meds. The teenager slumped in the back seat, half listening, half checking his texts. He looked up briefly when Sturdevant told him, “You’ve come a long way. I’m proud of you.” But Marq barely said goodbye as he jumped out of the car in front of a convenience store on an avenue scattered with a pawnshop, a liquor store and several Baptist churches, and he all but admitted he was planning to spend the afternoon smoking weed and looking at Instagram. “Knucklehead,” Sturdevant whispered, as the teenager slammed the door. Pulling off his favorite Dallas Cowboys baseball cap and running a hand over his bald head, Sturdevant added softly, “Breaks my heart.”

These patients of Sturdevant’s are the faces of one of America’s most troubling public-health crises. Thanks to the success of lifesaving antiretroviral medication pioneered 20 years ago and years of research and education, most H.I.V.-positive people today can lead long, healthy lives. In cities like New York and San Francisco, once ground zero for the AIDS epidemic, the virus is no longer a death sentence, and rates of infection have plummeted. In fact, over the past several years, public-health officials have championed the idea that an AIDS-free generation could be within reach — even without a vaccine. But in certain pockets of the country, unknown to most Americans, H.I.V. is still ravaging communities at staggering rates.

Last year, the Centers for Disease Control and Prevention, using the first comprehensive national estimates of lifetime risk of H.I.V. for several key populations, predicted that if current rates continue, one in two African-American gay and bisexual men will be infected with the virus. That compares with a lifetime risk of one in 99 for all Americans and one in 11 for white gay and bisexual men. To offer more perspective: Swaziland, a tiny African nation, has the world’s highest rate of H.I.V., at 28.8 percent of the population. If gay and bisexual African-American men made up a country, its rate would surpass that of this impoverished African nation — and all other nations.

The crisis is most acute in Southern states, which hold 37 percent of the country’s population and as of 2014 accounted for 54 percent of all new H.I.V. diagnoses. The South is also home to 21 of the 25 metropolitan areas with the highest H.I.V. prevalence among gay and bisexual men. Jackson, the capital of Mississippi, the country’s poorest state, is best known for blues, barbecue and “The Help.” It also has the nation’s highest rate — 40 percent — of gay and bisexual men living with H.I.V., followed by Columbia, S.C.; El Paso; Augusta, Ga.; and Baton Rouge, La. In Jackson, a small city of just over 170,000, half a dozen black gay or bisexual men receive the shock of a diagnosis every month, and more than 3,600 people, the majority of them black men, live with the virus.

The South also has the highest numbers of people living with H.I.V. who don’t know they have been infected, which means they are not engaged in lifesaving treatment and care — and are at risk of infecting others. An unconscionable number of them are dying: In 2014, according to a new analysis from Duke University, 2,952 people in the Deep South (Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee and Texas) died with H.I.V. as an underlying cause, with the highest death rates in Mississippi and Louisiana. Among black men in this region, the H.I.V.-related death rate was seven times as high as that of the United States population at large.


 Photo

Cedric Sturdevant at home in Jackson. Credit Ruddy Roye for The New York Times

Sturdevant, born and raised in Metcalfe, a tiny Mississippi Delta town of about 1,000, understands all too well the fear, stigma and isolation that can come with being a black gay man in the South. “Growing up, I was taught that God was not fixing to forgive a person who was homosexual,” Sturdevant said. “The Bible supposedly said you’re going straight to hell, automatically, there’s no forgiveness. There were several times I thought about suicide. There were several times I wanted to get sick and die. Finally, my thought was, I just want to get out of here.” He moved to Dallas, and then to Memphis.

When he learned he had H.I.V. in 2005, Sturdevant knew little about the virus and was too depressed and ashamed to tell anyone at first. When his partner died the following year, he let the disease consume him. “I was weak, had a fever of 103, couldn’t even keep down water,” he recalled. Sturdevant has shared his story too many times to count, to let young men know that he has been there, too, and to help them understand that they can survive this plague. He also knows that many black gay and bisexual men have been rejected and discarded, and has wrapped his arms around as many as he can grab hold of, treating them like family. Sturdevant has two daughters from an early marriage and three grandchildren, but he says he feels just as strongly about his 16 or so unrelated “children,” most of them living with H.I.V. He feeds them, sometimes houses them, but mostly listens to them. “Young black men feel abandoned and need someone they can believe in and who believes in them,” Sturdevant said as he drove past fields of fluffy cotton, his hands resting lightly on the steering wheel. “I told God I want to be able to help guys like me, that didn’t grow up with their father, and they started coming to me, wanting to talk. After a while, they would bring other people to me and say, ‘Dad, can you help him, too?’ ”

Sturdevant moved his seat back, preparing for a long drive, and adjusted the radio to 107.5, the local R.&B. oldies station. Toni Braxton’s wail — “I wish you’d hold me in your arms like that Spanish guitar” — filled the car. He was headed to a small town 90 miles east of the city to visit Jordon, an H.I.V.-positive 24-year-old. When Sturdevant himself was at his lowest point, he said, “I looked something like this boy we’re going to see.”

He took a call from De’Bronski, one of the “sons” he has cared for and bonded with. Sturdevant met the young man in 2009 and took him in; he later helped him deal with his H.I.V. diagnosis. “I love you, too,” Sturdevant told him. Then he turned down a dead-end street and pulled up in front of the one-story brick home where Jordon lived. “I’m real worried about him,” Sturdevant said, lowering his voice as he walked up the driveway’s cracked pavement toward the front door. Jordon had recently posted a photo of his skeletal frame on Facebook, asking friends to “pray for me.”

As he stepped into Jordon’s stuffy bedroom, Sturdevant’s eyes scanned from a wheelchair leaning against the wall to a can of Ensure on the bedside table before settling on the young man. He was rubbing his feet, wincing from H.I.V.-related neuropathy that caused what he described as “ungodly pain.” Jordon’s round, hooded eyes were sunk deep into his face. Gray sweatpants pooled around his stick-thin legs, so fragile they looked as if you could snap them in two. His arms were marked with scars from hospital visits and IVs. Over six feet tall, he weighed barely 100 pounds. He smiled slightly when he saw Sturdevant, dimples folding into his hollow cheeks. “Hey, Mr. Ced,” he said, his voice raspy.

In February 2016, Jordon suddenly found himself too weak and tired to attend the community-college classes he had enrolled in; he could hardly lift his head from his mother’s couch. He wasn’t accustomed to being sick and had tested negative for H.I.V. just five months before, so thinking he had a bad cold, he waited weeks before his family forced him to go to the emergency room at a hospital in his small town, where he was tested again. “The doctor said to me, ‘Your H.I.V. is so bad — how could you not know?’ ” Jordon recounted through tears. He ended up in intensive care for three weeks. “I honestly didn’t believe it.” He paused and then added quietly, “It was the worst day of my life.”

With effort, Jordon sat up slightly, untangling himself from a jumble of sheets. Sturdevant asked how he was doing, and he cataloged a laundry list of what he called his “old man” ailments. “I’ve had everything — diarrhea, hemorrhoids, now this neuropathy,” he said. “My body hates me.” Once a month, his mother or grandmother drove him to medical appointments in Jackson, to receive care from providers experienced in treating people living with H.I.V. and to avoid the small-town gaze at the local facilities; there is no Gay Men’s Health Crisis for him to visit in his small town, as there would be if he lived in New York. “Everybody knows everybody here,” Jordon said. “At the hospital, they know my mom and my brother and my grandmother. I would rather be around people who don’t know me.” Too ashamed to admit that he had the virus, Jordon had told few friends about his diagnosis.

“Are you taking your medicine?” Sturdevant asked. For many young men, the H.I.V. diagnosis and the illness are so overwhelming that maintaining a new and unfamiliar regimen of medication can be difficult. Jordon looked down. “Not as often as I should.” When he saw Sturdevant’s glare, he continued, sounding like a little boy. “I hate taking medicine; I hate it. I have to take six pills, now seven, eight, plus a shot —” Photo

Farish Street in Jackson. Credit Ruddy Roye for The New York Times

Sturdevant cut him off. “We all have to do this, Jordon. Don’t you want to get better?”

Jordon let his head fall back on the pillow. “I know I can get better, Mr. Ced,” he said, massaging his feet. “I just don’t know how everything got so bad.”

Given the advances in research, information and treatment, it seems inconceivable that someone living with the virus today, like Jordon, could look as if he had stepped out of the early years of the epidemic. And yet a series of fateful decisions and omissions, dating back to the discovery of the disease, have led to a present that looks like the past — but only for some.

History marks the beginning of the American AIDS epidemic as June 5, 1981, when an issue of the C.D.C.’s Morbidity and Mortality Weekly Report — the authoritative voice of the agency — highlighted five cases of pneumocystis pneumonia (PCP) in previously healthy men in Los Angeles. Healthy people do not contract a disease like PCP, which had been largely confined until then to patients on medication to suppress their immune systems for an organ transplant or cancer patients on chemotherapy. Though not stated explicitly, the language of the report, by omitting race, implied that its “five young men, all active homosexuals,” were white, which they were. But there were two more documented cases, not mentioned in the notice, and these sixth and seventh cases were black — one of them a gay African-American, the other a heterosexual Haitian.

Dr. Michael Gottlieb, the lead author of the report and a renowned physician specializing in H.I.V./AIDS, treated Rock Hudson before he died of AIDS complications in 1985 and still practices in Los Angeles. Gottlieb said he is often asked why he didn’t include in that first report the documented case of the gay African-American man, who had both PCP and cytomegalovirus, a virus that attacks the organs of patients with compromised immune systems. He explains that he discovered the case after the report was finalized. “Until recently, I wouldn’t have thought it mattered,” said Gottlieb, who said that he and others on the front line were grappling with an unprecedented and frightening medical mystery and largely working in the dark. “But in retrospect, I think it might’ve made a difference among gay black men.”

Including gay black men in the literature and understanding of the origins of the disease and its treatment could have meant earlier outreach, more of a voice and a standing in H.I.V./AIDS advocacy organizations, and access to the cultural and financial power of the L.G.B.T. community that would rise up to demand government action. But 35 years of neglect, compounded by poverty and inadequate local health care infrastructure, have left too many black gay and bisexual men falling through a series of safety nets.

This has been true of even the most recent advances. In 2010, the Obama administration unveiled the first National H.I.V./AIDS Strategy, an ambitious plan that prioritized government research and resources to so-called key populations, including black men and women, gay and bisexual men, transgender women and people living in the South. With a mandate to “follow the epidemic,” several pharmaceutical companies and philanthropic organizations also started projects to help gay black men, particularly in the Southern states. That same year, the Affordable Care Act and later the expansion of Medicaid in more than half of the country’s states linked significantly more H.I.V.-positive Americans to lifesaving treatment and care.

In 2011, HPTN 052, a study of 1,763 couples in 13 cities on four continents funded by the National Institute of Allergy and Infectious Diseases, found that people infected with H.I.V. are far less likely to infect their sexual partners when put on treatment immediately instead of waiting until their immune systems begin to fall apart. This “test and treat” strategy also significantly reduces the risk of illness and death. The data was so persuasive that the federal government began pushing new H.I.V./AIDS treatment guidelines to health care providers the following year. And in 2012, the Food and Drug Administration approved the preventive use of Truvada, in the form of a daily pill to be taken as pre-exposure prophylaxis (commonly called PrEP). It has been found to be up to 99 percent effective in preventing people who have not been infected with H.I.V. from contracting the virus, based on the results of two large clinical trials; an estimated 80,000 patients have filled prescriptions over the past four years.

But these measures have not extended to most black gay and bisexual men. A C.D.C. report in February noted that only 48 percent of black gay and bisexual men effectively suppress the virus with consistent medication, and the numbers are even lower for these men in their late teens and 20s. In 2014, nearly one in five black gay men who had received a diagnosis of H.I.V. had progressed to AIDS by the time they learned of their infection — which meant that they were generally very ill by the time they began treatment. Only a small percentage of black people use PrEP to prevent contracting the virus, accounting for only 10 percent of prescriptions; the vast majority of users are white. Many black gay and bisexual men either can’t afford PrEP or don’t know about it — they may not see a doctor regularly at all, and many medical providers haven’t even heard of PrEP. Continue reading the main story

Photo

Benjamin Jennings. Credit Ruddy Roye for The New York Times


Turning things around would mean expanding testing and providing affordable treatment for those who are positive — to stop sickness and dying and also to block transmission of the virus. It would also require getting information and medication, including PrEP, to those most at risk. Even more challenging would be reducing the stigma, discrimination and shame that drive gay and bisexual men to hide their sexuality and avoid the health care system — and making sure providers have adequate resources and understand how to care for H.I.V. patients.

“It’s deeply troubling when 50 percent of African-American gay men are expected to get H.I.V. during their lifetime, but it’s also been a clarion call for all of us to improve on what we’re doing,” said Dr. Jonathan Mermin, the director of the C.D.C.’s National Center for H.I.V./AIDS, Viral Hepatitis, S.T.D. and TB Prevention. “What we have been trying to do is ensure that we’re having the greatest effect with the resources we’re provided.”

Few believe there is the kind of energy, leadership, money and political will in the current political climate to fix the situation in the community that has fallen through the cracks for so long. And experts in the field have grown increasingly worried about the new administration’s commitment to fighting the disease. Soon after President Trump’s inauguration, the web page of the Office of National AIDS Policy, the architect of the National H.I.V./AIDS Strategy, was disabled on the White House website. The president’s proposed budget includes a $186 million cut in the C.D.C.’s funding for H.I.V./AIDS prevention, testing and support services. The congressional fight over the repeal of the Affordable Care Act, and the president’s declarations that “Obamacare is dead,” have conjured a disastrous return to even more alarming conditions, like waiting lists for medication. As recently as 2011, the AIDS Drug Assistance Program state-by-state list of people waiting for H.I.V. medication ballooned to over 9,000 people, mostly poor black and brown men in Southern states.

“The key to ending the AIDS epidemic requires people to have either therapeutic or preventive treatments, so repealing the A.C.A. means that any momentum we have is dead on arrival,” said Phill Wilson, chief executive and president of the Black AIDS Institute, a Los Angeles-based nonprofit. “For the most vulnerable, do we end up back in a time when people had only emergency care or no care and were literally dying on the streets? We don’t know yet, but we have to think about it.”

June Gipson, president and chief executive of My Brother’s Keeper, the Jackson nonprofit Cedric Sturdevant works for, believes that the repeal of the Affordable Care Act wouldn’t have an immediate catastrophic effect in her state — but only because things are already so dire. Like most of the South, Mississippi refused Medicaid expansion, and nearly half of its citizens who are living with H.I.V. rely on the Ryan White H.I.V./AIDS Program to stay alive. Named for an Indiana teenager who contracted H.I.V. through a blood transfusion in the ’80s, this federal program provides funding for H.I.V. treatment and care for those who have no other way to finance their medication. If the A.C.A. is repealed, Gipson said, “it just means that the entire country becomes Mississippi.”

For nearly two decades, the United States has focused money and attention on the H.I.V./AIDS epidemic elsewhere. Barbara Lee, the longtime United States representative from Northern California, has signed her name as a sponsor to every piece of major federal H.I.V./AIDS legislation since she was first elected in 1998. In 2003, she was a co-author of legislation that led to the President’s Emergency Plan for AIDS Relief (Pepfar). The five-year, $15 billion global strategy provided prevention, treatment and care services to the countries most affected by the disease, almost exclusively in Africa. The largest international health initiative in history to fight a single disease, Pepfar is considered a success story by any measure and a crowning achievement of George W. Bush’s presidency.

Black America, however, never got a Pepfar. Though the raw numbers were much lower than in Africa, parts of our country looked like the continent the program was created to save. Yet while buckets of money went overseas, domestic funding for H.I.V./AIDS remained flat, and efforts to fight the disease here were reduced to a poorly coordinated patchwork affair. “When we saw that the epidemic was out of proportion in the black community, we started calling for a domestic Pepfar that would bring new resources to the effort, create clear and ambitious objectives and rebuild health care infrastructure around the country,” Lee said. “But we just couldn’t get the administration to focus on a domestic plan.”

Greg Millett, a senior scientist for the C.D.C. for 14 years and a senior policy adviser for the Obama administration’s White House Office of National AIDS Policy, put it more candidly. “During the Bush years, the administration dropped all pretense that they cared about AIDS in this country,” said Millett, who is now the vice president and director of public policy at amfAR, the Foundation for AIDS Research. “The White House said H.I.V. is only a problem in sub-Saharan Africa, and that message filtered down to the public. Though the Bush administration did wonderful work in combating H.I.V. globally, the havoc that it wreaked on the domestic epidemic has been long-lasting.”


 Photo

Jermerious Buckley in his apartment in Jackson in May. Credit Ruddy Roye for The New York Times

Beginning in the late ’90s, the United States government funneled billions of federal dollars into abstinence-until-marriage programs here and abroad. In place of effective sex education, these programs often discouraged condom use while teaching abstinence as the only way to prevent the spread of AIDS — even as well-regarded research established that this kind of sex education does not lower the risk of contracting H.I.V. and other sexually transmitted diseases.

During this time, many scientists, researchers and government administrators were afraid to speak openly about condoms, needle exchange and L.G.B.T. issues for fear of reprisal and loss of funding. Community organizations became targets of anti-gay crusades, subjected to intense scrutiny, including exhaustive audits, by federal agencies. “It is no coincidence that new rates of H.I.V. infection among gay men, especially gay black men, began to spike sharply from 2000 on, because of an anti-science campaign that allowed for little or nothing to be done for a maligned community simply due to ideology and bigotry,” Millett said. “The hostile environment made funding effective H.I.V.-prevention programs, messages or research impossible for U.S. communities most impacted by H.I.V.”

The election of Barack Obama brought renewed attention to the domestic epidemic and loosened the conservative grip on the federal government’s prevention and research agenda. At the first post-Bush national H.I.V.-prevention conference in 2009, Christopher Bates, then the director of H.I.V./AIDS policy for Health and Human Services and interim executive director of the Presidential Advisory Council on H.I.V./AIDS, kicked off the event in Atlanta by jumping onstage with duct tape on his mouth, ripping it off and shouting, “Finally, I can speak!” On World AIDS Day in 2011, Obama directly addressed the H.I.V. crisis among gay black men in a speech at George Washington University: “When new infections among young black gay men increase by nearly 50 percent in three years, we need to do more to show them that their lives matter.”

But good intentions have not translated into enough funding and resources — from either the government or philanthropic organizations. Good intentions also have not counteracted the crippled medical infrastructure in states like Mississippi, which the Commonwealth Fund, an independent health-policy research foundation, ranks dead last in more than 40 measures of health-system performance. A 2014 study conducted by Dr. David Holtgrave of the Johns Hopkins Bloomberg School of Public Health found that to make any real progress in the H.I.V./AIDS crisis among black gay and bisexual men in the United States, the government would need to invest an additional $2.5 billion to address unmet testing, care, treatment and prevention needs. Despite the higher H.I.V. diagnosis and death rates in the Deep South, the region received $100 less in federal funding per person living with H.I.V. than the United States over all in 2015.

As the center of the epidemic has moved from New York and San Francisco to the smaller cities in the South, and from gay white men of means to poorer people of color, L.G.B.T. advocacy and fund-raising has shifted to marriage equality. In 2013, H.I.V. activists persuaded 35 L.G.B.T. leaders to sign a statement and create a video imploring the greater gay community to recommit to the AIDS struggle. The message: “We need you to come back.” But of $168 million in H.I.V./AIDS philanthropic dollars spent in the United States in 2015, $31 million was disbursed to the South, just 19 percent of total H.I.V. philanthropy in the United States; only $26 million directly targeted African-Americans, and just $16 million went directly to gay and bisexual men, according to the organization Funders Concerned About AIDS.

During Millett’s decades in government and nonprofit organizations, he has combed through mounds of data about H.I.V./AIDS and black gay and bisexual men. Two years ago, he and his amfAR colleagues published a comprehensive report titled “H.I.V. and the Black Community: Do #Black(Gay)Lives Matter?” When the calm, usually sunny Millett, known for his bookish blue glasses and ready smile, talks about what he calls this “perfect storm,” his voice takes on a harder edge. “We are going to eventually end AIDS in the United States, but I fear it’s not going to happen for black M.S.M.,” he said, referring to men who have sex with men. “We have waited too long. With so many black gay men already infected, the horse is already out of the barn.”

On Saturday nights, men of color in and around Jackson make their way to the gay club Metro. The windowless building with royal blue paint peeling off aluminum siding stands on Highway 80 next to a run-down car shop and has no sign out front; you just have to know. One evening in October, Cedric Sturdevant walked through the dim front room with Regi Stevenson and James Watson, two 20-something colleagues at My Brother’s Keeper. A handful of guys were J-Setting, dancing in the exuberant style that pays homage to the Prancing J-Settes — Jackson State University’s famous all-female dance squad — combined with a splash of vogueing straight out of Harlem’s drag ballroom scene. The three men watched the dancers performing tightly choreographed moves using chairs as props, before greeting their friend Jermerious Buckley, 30, resplendent in green contacts and red four-inch heels, leaning against the bar.

In a too brightly lit wood-paneled back room, Sturdevant and the younger men set up a table, displaying brochures, condoms, lube and a few lollipops. Stevenson and Watson, both open, friendly and handsome, attracted a few guys to the table, but mainly ones who had already heard the protect-yourself-against-H.I.V. spiel. Stevenson pointed out that the crowd was sparse — maybe 50 men and a few transgender women — because so many Jackson residents were attending the annual state fair. “Anyway, it’s always hard to make contact in the club,” he said. “I prefer one on one. That way it’s not, ‘I’m trying to educate you’; we’re just talking and having fun. I tell them what I do, and they feel comfortable asking questions.” 

Photo

Jennings taking part in Sturdevant’s support group in May. Participants were asked to look in the mirror and say something positive about themselves. Credit Ruddy Roye for The New York Times


Stevenson took out his phone and opened Jack’d, a hookup app popular with men of color. He pulled up his “professional” profile — on which he’s smiling, clean-cut and buttoned-up amid a sea of bare chests and crotch shots. At the bottom he had put a link to a website with information about PrEP; next to it he’d written: “Inbox me if you want to know more.” “I’ve gotten a bunch of messages asking about side effects, how much it costs and does it work,” Stevenson said. He and Watson said they take the medication “just in case.”

After an hour they folded up the table and stuffed the condoms and brochures back into a gym bag, dropped it next to Sturdevant, who was sipping a syrupy cocktail from a can, and headed out to the dance floor. A remix of Rihanna’s “Where Have You Been” came on, so loud the walls shook. Like everyone else, Stevenson and Watson, who are dance coaches and choreographers, had perfected their moves from watching YouTube videos of the Prancing J-Settes. Stevenson bent and thrust, at once explosive, angular and precise. Watson’s face was still as a stone; as he snapped his neck to the side, his waist-length dreadlocks whipped around his head. After a few songs, the music ended as the club prepared for a 1 a.m. drag show. Stevenson, sweaty and breathless, melted into a conversation with other dancers.

Everybody knows everybody else in Jackson’s small, tight-knit black gay community, and most men will find their sexual partners in this network. Most scientists now believe that risk of contracting H.I.V. boils down to a numbers game rather than a blame game: If the virus is not present in your sexual network, you can have unprotected sex and not get infected. But if you are in a community, like Jackson, where a high percentage of gay and bisexual men are infected with H.I.V. — and many don’t know it and go untreated — any unprotected sexual encounter becomes a potential time bomb. This explanation of “viral load” helps dispel the stubbornly held notion that gay and bisexual black men have more sex than other men, a false perception embedded in the American sexual imagination and fueled by stereotypes of black men as hypersexual Mandingos dating back to slavery.

“Black men are not just out here having unprotected sex willy-nilly; the science disproves that,” said Terrance Moore, deputy executive director of the National Alliance of State and Territorial AIDS Directors in Washington. He pointed to stacks of studies over the years, including a groundbreaking, exhaustive 2006 data dive led by Greg Millett that was published in The American Journal of Public Health. In this and other studies, Millett and his colleagues found that gay black men engage in risky sexual practices no more frequently, are as consistent about condom use and have fewer sex partners than their nonblack peers. “It’s that the viral load in communities of black gay men is higher, which puts them at disproportionate risk,” Moore explained. “Plus, these are the same individuals that are dealing with structural barriers around lack of employment, lack of education and opportunities, transportation and, of course, very, very overt institutional racism.”

An elevated viral load in a smaller sexual network (because most people still tend to have sex with people of the same race), amplified by the structural issues that Moore pointed to, also explains why H.I.V. rates have always been disproportionately high in the black community over all. But in the first decades of the epidemic, these ideas and explanations had not been widely accepted to explain the growing body of data pointing to fast-rising numbers of H.I.V. cases among black heterosexuals — in rates unmatched by those of white Americans. In fact, the African-American community was largely in denial about the fact that H.I.V./AIDS was a black issue. Worse, most believed the disease was a conspiracy on the part of the federal government to kill off the race, God’s punishment for homosexuality or simply not a subject for polite conversation, because the disease was thought to be connected to promiscuity and crack and heroin use.

The community’s awakening came in 1991, when Magic Johnson tearfully announced, “Because of the H.I.V. virus I have obtained, I will have to retire from the Lakers today,” and warned, “It can happen to anyone.” By 1994, AIDS had become the No. 1 killer of all African-Americans ages 25 to 44. The virus was 16 times as common in black women as in their white counterparts — and the gap would widen over the next few years. I was an editor at Essence in 1994 when the magazine’s editor in chief, Susan L. Taylor, insisted that we shine a light on the disturbing increase of H.I.V. among African-American women by putting Rae Lewis Thornton, a Chicago woman who described herself as “young, educated, drug-free and dying of AIDS,” on the cover.

I had been writing about AIDS in the black community since the mid-’80s but had never seen anything like the coordinated efforts that started in the late ’90s, when civil rights groups, politicians, clergy, fraternities and sororities and celebrities stepped up to encourage testing and distribute prevention information. All the major black publications collaborated in a highly visible campaign to spotlight the disease as a major health crisis. Black churches created AIDS ministries and offered H.I.V. testing — and the number of congregations participating in the Black Church Week of Prayer for the Healing of AIDS ballooned to more than 10,000.

During the 2004 election, the PBS journalist Gwen Ifill brought the issue to the mainstream stage as the moderator for the vice-presidential debate. She asked the candidates Dick Cheney and John Edwards what they planned to do to end the spread of H.I.V./AIDS — “not about AIDS in China or Africa, but AIDS right here in this country” — among black women. Cheney replied that he was not aware of the numbers, while Edwards spent more than a minute discussing AIDS in Africa. In 2006, I attended the International AIDS Conference in Toronto with a delegation of black journalists, civil rights leaders, government officials, politicians and celebrities, including the singer Sheryl Lee Ralph, Representatives Maxine Waters and Barbara Lee, the Rev. Jesse Jackson and Julian Bond, chairman of the N.A.A.C.P., who famously announced, “Now is the time for us to face the fact that AIDS has become a black disease.” 


Photo

Justin Huff at Grace House in April, beside a makeshift graveyard that holds the cremated remains of some 35 residents. Credit Ruddy Roye for The New York Times

Most of the lock-step mobilization efforts focused on preventing the disease in black women, who, for the most part, were contracting the virus through sex with male partners. Though the C.D.C. and other agencies offered plenty of alarming statistics confirming the high and growing numbers of H.I.V. cases and deaths among black women, there was a lack of empirical evidence to clearly explain why the rates were so high. Experts in academia and government researchers tried to unravel a knotted tangle of factors: Women were contracting the virus from bisexual men; higher rates of sexually transmitted infections among black women facilitated the spread of H.I.V.; socioeconomic issues drove up the rates of all disease. The lack of research to create a coherent explanation was further confounded by a reluctance on the part of some scientists and activists to perpetuate the dangerous myth of black women as sexually promiscuous — another holdover from slavery.

Given the confusion, it was simplest to latch onto the most provocative idea: that black gay men, who we knew were also contracting H.I.V. in high numbers, provided a “bridge to infection” to black heterosexual women, a phrase I first heard from researchers at a medical conference. As the theory went, closeted black gay men were using women as unsuspecting “cover girls” to hide their sexuality and then infecting them with H.I.V. In my reporting for both The Times and Essence, I found no shortage of anecdotal accounts of H.I.V.-positive women who were infected by male partners who had been having sex with other men in secret. As a black lesbian myself, I understood the stigma, shame and fear that could drive black gay men to create seemingly straight lives while sleeping with men — and end up unwittingly infecting their female partners with H.I.V. This idea made a certain amount of sense in the frustrating absence of scientific data.

In retrospect, the high rate of H.I.V. infection among African-American women was a result of a complicated combination of all these factors, as well as the reality that after decades of denial and neglect, the viral load piled up in black communities, making any unprotected sexual encounter with anyone a potential “bridge to infection.” But two decades ago, in the midst of a very scary, fast-growing epidemic, the down-low brother became the AIDS boogeyman. I first heard about the “D.L.” from J.L. King, an author and self-proclaimed sex educator whom I interviewed in 2001. He had just warned a rapt audience of health care providers and H.I.V. educators at an AIDS conference in Washington: “I sleep with men, but I am not bisexual, and I am certainly not gay. I am not going to your clinics, I am not going to read your brochures, I am not going to get tested. I assure you that none of the brothers on the down low like me are paying the least bit of attention to anything you have to say.”

King’s subsequent 2004 book, “On the Down Low: A Journey Into the Lives of Straight Black Men Who Sleep With Men,” appeared on the New York Times best-seller list for a number of weeks and spawned two “Oprah” shows, an episode of “Law & Order S.V.U.,” a BET documentary, a sequel by King and another book by his ex-wife. Ta-Nehisi Coates jumped into the fray in a 2007 essay for Slate that questioned why the myth of the “on-the-down-low brother” refused to die, referencing a controversial 2003 cover story in this magazine by a white writer who went into the scene to uncover closeted black men who lead double lives.

Keith Boykin, a former Clinton White House aide, became so incensed by the down-low hysteria that he wrote a 2005 best-selling book, “Beyond the Down Low: Sex, Lies and Denial in Black America.” “Because the whole down-low story was doing a disservice to the black gay community and creating a racially troubling narrative that black men who have sex with men were villains, I felt I had to step in and correct the record,” said Boykin, a CNN commentator who teaches at Columbia University’s Institute for Research in African-American Studies. “I think the near-decade-long obsession with the down low diverted our attention into what was really a side issue.”

In 2010, after Oprah Winfrey ran her second show about the down low, again featuring King, Dr. David J. Malebranche, a black physician and one of the country’s foremost experts on H.I.V. and black gay and bisexual men, wrote a heartfelt open letter to the talk-show host. “We are not all self-loathing, secretive, unprotected-sex-having, disease-ridden liars,” Malebranche wrote. He posted the letter on Oprah’s website, and after it was removed, posted it on his own Facebook page. People all over the world shared the post, and it received hundreds of comments.

In the end, the organized H.I.V. outreach and education that proved successful to black women never translated to black gay men — and the excessive focus on the down low sucked away critical time, energy and resources. Between 2005 and 2014, new H.I.V. diagnoses among African-American women plummeted 42 percent, though the number of new infections remains unconscionably high — 16 times as high as that of white women. During the same time period, the number of new H.I.V. cases among young African-American gay and bisexual men surged by 87 percent.

On Wednesday evenings once a month, Sturdevant runs an H.I.V./AIDS support group in a stark conference room near the State Capitol in Jackson. The meetings end promptly at 7:30 p.m., so the dozen or so young men can race home to watch “Empire.” Sturdevant began October’s gathering with a prayer. “Hold hands and bow your heads — and take off that hat,” he said to Tommy Brown, who had rushed in from his job at Popeyes. The willowy young man snatched off his baseball cap, embroidered with the fast-food chain’s red-and-orange logo, and lowered his head. “Gracious God, we want to thank you once again for the unity that we have here, Lord,” Sturdevant intoned in his gravelly baritone. “Thank you for showing us how to love each other and love ourselves. We ask that you bring more people in that need somebody to talk to. That need the laughter. That need the understanding.” 

Photo

The corner of Farish & Cohea Streets in Jackson. Credit Ruddy Roye for The New York Times

As the men settled into their seats, Sturdevant asked them to go around and “check in.” Jermerious Buckley, watchful behind black rectangular glasses, with no sign of the makeup and colorful pumps he wore on weekends at Metro, told the group, “I’m doing a whole lot better.” Last year, he said, “Daddy,” as he called Sturdevant, had pulled him back from the dead, after he had shrunk to 85 pounds, his arms covered with Kaposi’s sarcoma lesions, his kidneys failing. He felt like a “zombie,” he said, too weak and hopeless to bother with his meds. Now Buckley thought he was finally strong enough to get back onto the pageant circuit where he competed. From his phone, he pulled up a picture of himself as “Akeelah,” unrecognizable in a shimmery white body-hugging gown and towering wig. “November in New Orleans — y’all wish me luck,” he said.

The group turned toward Benjamin Jennings, who wore a serious expression, with a shock of long hair in dreadlocks flipped to the side. When he said it was his first time there, everyone clapped. “I was diagnosed July 8 of this year, and my goal is to learn everything that I can about this thing,” said Jennings, 21, talking in a tumble of words as he pulled at his cropped T-shirt. “The first person I told was my mom. Thank God — I am so lucky to have her in my life.” He paused, looking into the faces of the men around the table and speaking more slowly. “I used to keep my feelings bottled up, but then I started opening my mouth on it,” he said. “I did everything to prevent this disease, but because of one slip-up I have it. Now I want to help anyone I can in any type of way. My goal is to not to let anyone judge me or let this disease own me.”

The bias that black gay and bisexual men still face poisons the H.I.V. picture in Mississippi and throughout the South. In 2016, Gov. Phil Bryant of Mississippi signed HB 1523, the Protecting Freedom of Conscience From Government Discrimination Act, one of the country’s most sweeping and repressive anti-L.G.B.T. laws. Though currently blocked by federal court and under appeal, the legislation, if allowed to proceed, would allow churches, religious charities and private businesses to deny services in a broad variety of contexts to L.G.B.T. people.

Many say rejection feels most acute and painful from the institution that should offer sanctuary and support: the black church. Individual congregations, religious organizations and clerics have made strides in openness and acceptance, but in general the black church remains largely absent from and often hostile toward the L.G.B.T. community. An African-American pastor in Jackson, the Rev. Edward James of Bertha Chapel Missionary Baptist Church, became a cringe-worthy symbol of homophobia in December 2014 for his protest against same-sex marriage equality. News outlets and social-media accounts shared a photo of him in his clerical robe, holding a sign that read: “Marriage is one man and one woman. Anything else is a perversion,” next to a horse clad in a white wedding dress. “The church is someplace to go for release and spiritual comfort, but the church is actually fearful for me,” said Buckley, who, growing up, attended Baptist services with his grandmother in the delta. “Now I stay at home on Sunday. It’s too hard.”

All too often, when people living with H.I.V. in Jackson lack the support of their families, community and the church, they end up in Grace House, a homeless facility on a sleepy block in the midtown section of the city. A cluster of four suburban-looking houses, Grace House originally functioned as a hospice, where the sick came to die. Now that the infected are living longer — and the numbers of gay and bisexual men with the virus continue to creep up — more and more young men are seeking shelter.

Until recently, Justin Huff, a former Jackson State student, shared a room on the second floor of Grace House’s main facility. He was infected with H.I.V. a year and a half ago, when a man he met on Jack’d sexually assaulted him. He received his diagnosis just after his 21st-birthday celebration. “I was throwing up and couldn’t eat anything for a few days; I thought it was from the drinking,” Huff said. “When I went to the doctor, he was like, if I hadn’t made it in the next two days, I would’ve been dead.”

Frightened and overwhelmed, he eventually landed on the doorstep of Grace House. “I couldn’t believe I was living in a shelter,” said Huff, who is now couch-surfing, applying for jobs at fast-food outlets and retail shops and attending Sturdevant’s support group, determined to stay healthy. “I felt like I had no one. Off and on, I got tired of living, because all I was doing was basically dying trying to stay alive.”

Behind Grace House is a small, quiet makeshift graveyard that holds the cremated remains of 35 or so residents whose families did not pick up their bodies after they died. Ceramic angels, pieces of glasswork and other mementos left by friends in memory of the deceased dot the patch of earth at the base of a pecan tree. Stacey Howard, 47, the director of programs, remembers one of the last people buried there, a young man who was H.I.V.-positive and addicted to crack, who had lived off and on at Grace House before he was found dead on the street in the spring of 2016.

“They had him at the local funeral home and were getting ready to turn his body over to the state, because no one would claim his remains,” Howard explained as she leaned against the tree. “We got in touch with his family, who didn’t want anything to do with him but at least signed the paperwork. I think it’s part of our responsibility that when someone in our community passes away, we give them the dignity of a place to rest.”

On a late, lazy Sunday afternoon in early April, Sturdevant, in cutoff fatigues and a white tank top stained with barbecue sauce stretched over his generous belly, was flipping chicken and rib tips on his grill. He had gathered his family — nearly two dozen sons and daughters, some related by blood, most not — to his house in South Jackson for a family barbecue. His daughter Tenisha, who had moved in with her two children in November, handed off 6-month-old Kory Cedric to her father. Sturdevant nuzzled his grandson’s chubby cheek before passing him to one of his unrelated “sons,” Cord, who lifted the laughing baby high over his head.

Sturdevant had gathered the crew to announce that he was taking a new job. He would be the manager of the SPOT — Safe Place Over Time — a new program located on the third floor of the Jackson Medical Mall in a former eyewear shop, funded by ViiV Healthcare, a pharmaceutical company that produces a dozen H.I.V. medications. He would continue to provide services and support for young gay and bisexual men and transgender women and still consult for My Brother’s Keeper. The new gig offered Sturdevant autonomy, but also $8,000 more per year. “I had to wait until after Christmas to get presents for the children and grandchildren,” he said, sipping cognac and Coke, ice cubes bouncing against the sides of a coffee mug, his cheeks rosy with cheer. “I always want to be able to take care of my family,” he added, “to be able to say, ‘Don’t worry; I got you.’ ”

Despite the persistent anti-L.G.B.T. stigma and entrenched social and economic issues that cling to the South, Sturdevant feels a complicated, bone-deep tie to the people and the place. When he encourages his “sons” and “daughters” to take care of themselves and others, he is echoing the love and acceptance he received from his own large family. After years of hiding, when he came out to his mother in his 20s, she told him, “I love you regardless.” When his family eventually found out that he was sick, his mother and sister drove up to where he was living in Memphis, along with six carloads of aunts, uncles, nieces, nephews and cousins. They tried to serve him plates laden with down-home food that he was too ill to eat and did their best to love him back to health. In the hospital, he finally admitted to his mother he had AIDS. “She told me, ‘Boy, you gonna be all right; God got you,’ ” he recalls, tearing up. In the end, they took him home. He moved back to his mother’s house in Metcalfe, with somebody from the sprawling network of nearly 100 family members always close by, until he recovered. “They saved my life, and I’ll never forget that,” he said.

Black gay and bisexual men and the organizations and activists that support them have come to the painful realization that the nation and society have failed them and that they must take care of themselves and one another. Their group names and slogans reflect a kind of defiant lift-as-we-climb self-reliance: My Brother’s Keeper; Us Helping Us in Washington; the Saving Ourselves Symposium that takes place in Jackson this week; Our People, Our Problem, Our Solution, the tag line of the Black AIDS Institute. Since last October, the young men in Sturdevant’s orbit have been supported by the fragile scaffolding that “Mr. Ced” has constructed around them and with them. Jordon has gained weight and is up and walking. Marq has promised to stay on his meds and has begun calling Sturdevant “Dad.” Benjamin Jennings has a new job as a corrections officer at a prison north of Jackson. Jermerious Buckley is “mother,” as he puts it, to six gay “children” of his own.

But even Sturdevant knows he can’t save everyone. A shadow passes over his face and his voice grows low when he talks about the one young man he couldn’t save. He remains haunted by him. A few years ago, a co-worker, Dot, suggested Sturdevant talk to a quiet fair-skinned man who was struggling with his H.I.V. diagnosis. “I told him my story and let him know, ‘You can do this, too,’ ” Sturdevant recalled. “He was in denial and very secretive, but still, he got into treatment and was doing good.”

But when Sturdevant saw him again in January 2016, he had stopped taking his meds and had taken a bad turn. “He was nothing but skin and bones,” Sturdevant said, looking down at his hands. “His eyes were bloodshot red. It almost looked like they were bleeding. We took him to the clinic, but the doctor said, ‘Get him to the hospital immediately.’ ”

For the next two months, Sturdevant and Dot kept a close eye on the young man, scolding, nagging and pleading with him to stay in treatment and to tell his family the truth so he would have someone to support him. On a Friday in March 2016, Sturdevant arranged to visit him and take medication to his house. But when he arrived, there was no answer. “I banged on the door, and then constantly called him all weekend,” Sturdevant said. “On Monday, they told me he had passed away.”

Sturdevant was devastated. Sometimes when he closes his eyes, he said, he still sees the smiling, fit and slender 27-year-old. “I felt like I had failed,” he said, choking up. “I kept thinking, He was going to get better, so how could this happen?” He took a breath, looking uncharacteristically tired, his eyes focused on a point off in the distance. “Listen, I know I can’t be there night and day for everyone. But at this point now, I feel like I can’t lose another young man to this disease.”


Linda Villarosa is the director of the journalism program at the City College of New York in Harlem and an assistant professor of media and communication arts. She is a former New York Times science editor and Essence magazine executive editor.

https://www.nytimes.com/2017/06/06/magazine/americas-hidden-hiv-epidemic.html?_r=0

Monday, 19 June 2017

Opioids For Chronic Nerve Pain Getting A Bad Rap

Today's post from paindr.com (see link below) was first published in 2015 but remains relevant today as the so-called war on opioids continues in the media and political circles. First let's relate opioid prescription to our core subject of neuropathy. Most nerve damage patients experience symptoms over a period of time which lead them to follow a pretty much standard course of drugs which hasn't changed in decades. Many people get limited relief from these drugs and as their symptoms worsen, they're left with little option but to resort to the strongest analgesics - opioids. These drugs carry risks but are often more effective. Opioid use needs careful control and monitoring from the doctor to reduce the risk of addiction, or a build up of the need for stronger doses. Switching drugs is often necessary, combined with a holistic approach to pain control. However, with careful control, opioids can be effective and are often the difference between a relatively normal daily life and unbearable pain. Patients in this situation are not helped by the current hysteria surrounding opioid overdose, criminality and addiction, where the majority are being forced to suffer for the mistakes and misdemeanors of the few. This is also a case of a theme being picked up by politicians who then begin to direct matters based on their own prejudices. This article highlights the lack of unbiased decision making by the official advice organs involved in setting the rules for opioid prescription. When politicians begin to manipulate the facts to suit their purpose and shroud their decisions in secrecy, you know we're heading for trouble. In this case, it's the chronic pain patient who eventually suffers.


Good, Bad, and Ugly of CDC Proposed Opioid Guidelines 
Posted by Jeffrey Fudin - October 23, 2015 

Anyone reading this is likely familiar with the “confidential” proposed CDC Guideline for Prescribing Opioids for Chronic Pain”. Before even reading the proposed guidelines, my initial inquest was to review the panel of 17 presumed expert panelists. My reaction, much akin to almost every recent media post, was that the deck was stacked against fair balance. One particularly glaring omission on the panel was lack of a single pharmacist, much less one with post-graduate training and expertise in pain pharmacotherapeutics. To me, it seems that writing drug guidelines without a single pharmacist is like writing diagnostic guidelines without a single medical doctor.

More recently, the indignation among key opinion leaders and organizations within the pain space is attributable to the carelessness with which these “guidelines” were approached by a recognized government agency that heretofore was hailed as an organization to protect and serve the public. In our minds, that includes patients that are suffering daily with pain syndromes who require chronic opioid therapy.

On October 20, 2015 Dr. Robert Twillman, Executive Director of the American Academy of Pain Management (AAPM), responded with a letter to Honorable Fred Upton, Chairman of the House Energy and Commerce Committee, United States House of Representatives. Dr. Twillman and AAPM graciously agreed to share their perspective here.

But first, Dr. Twillman offers this summary…

Earlier this year, the US Centers for Disease Control and Prevention (CDC) requested assistance in developing an “evidence-based guideline” for opioid prescribing, with the intent of using this guideline to reduce the number of overdoses and deaths resulting from the use and misuse of opioid analgesics. They did this despite an NIH panel’s finding, only three months before, that, essentially, there is no credible evidence that a clinician can use to make any important clinical decision regarding the long-term use of opioids to treat chronic pain.

Throughout the guideline development process, CDC has attempted to maintain strict secrecy over the entire project, refusing to reveal the names of experts recruited to help them develop the guideline, the stakeholder groups asked to review their first draft, and the additional experts who will help develop a final draft after considering the comments received. They engaged in a “box-checking” exercise when they revealed the recommendations in this draft guideline during a bizarre webinar, giving participants only two days to file comments afterward. And, now that they have received comments, they are producing a revision that no one outside the agency will see until the final version is published most likely in January.

The complete lack of transparency in CDC’s process is unacceptable; to compound matters, the core expert group recruited by CDC to help develop the guideline is biased and has only one pain management specialist. It is clear to us that this is a guideline intended to reduce opioid prescribing, as opposed to one intended to help people use opioids more safely.

Below is a letter (pasted in) and hyperlinked HERE, that I sent to the Congressional committees with oversight responsibility for CDC, detailing the problems with this guideline development process. It details our concerns, and asks that Congress tell CDC to withdraw this guideline and start over, using a process that is transparent, unbiased, and consistent with the usual manner in which federal agencies develop rules and regulations.

As always, comments are encouraged and welcome!

Dr. Bob Twillman is the Director of Policy and Advocacy for the American Academy of Pain Management. In that capacity, Dr. Twillman is responsible for overseeing federal and state pain policy developments and advocating for those supporting an integrative approach to managing pain. He also serves as Chair of the Prescription Monitoring Program Advisory Committee for the Kansas Board of Pharmacy. Dr. Twillman received his Ph.D. in Clinical Psychology at the University of California in Los Angeles, and maintains a volunteer faculty appointment as Clinical Associate Professor of Psychiatry and Behavioral Sciences at the University Of Kansas School Of Medicine in Kansas City, KS. Prior to taking his current position, Dr. Twillman was a full-time faculty member at the University of Kansas Medical Center, where he founded and directed the inpatient pain management program and was a co-founder of the hospital’s Palliative Care Team. He has been actively involved in pain policy through his work with the Alliance of State Pain Initiatives and the American Pain Society for many years.


October 20, 2015

The Honorable Fred Upton
Chairman
House Energy and Commerce Committee
United States House of Representatives
Washington, DC

Dear Chairman Upton:

I am writing to you today on behalf of the American Academy of Pain Management (the Academy) to express our concerns about an effort underway by the US Centers for Disease Control and Prevention (CDC) to develop a guideline for prescribing of opioid analgesics to treat pain. While we have concerns about some of the content of the draft guideline that CDC has presented, the subject of this communication is the process that is being undertaken to develop that guideline. We are very concerned that this process is deeply flawed, and that any guideline developed as a result: 1) is in no way supported by current standards of chronic pain management; (2) will alter clinicians’ decision processes relative to their most difficult pain control challenges; and (3) will certainly have negative impacts on patients. Following are some of the key points of concern, which we would like to bring to your attention.

Summary of the guideline development process

On January 15, 2015, CDC issued a request for applications, seeking assistance in developing an evidence-based guideline for prescribing of opioids to treat chronic pain. CDC then revealed no further information about this process publicly until June 16, 2015, when it invited a limited number of stakeholders to review an anticipated draft guideline. It should be noted that the draft guideline document, when eventually released, stated that the draft had been reviewed by a group of federal partner agencies, but the timing for that review is unknown to us.

CDC followed these emailed stakeholder invitations with an email to a larger group on August 25, 2015, announcing that it would hold a webinar for a limited number of interested participants on September 16, 2015. This emailed invitation noted that comments on the draft guidelines could be submitted orally over the telephone during the webinar, by writing in real-time via the webinar portal, and by email for 25 hours following the webinar. CDC later extended the deadline for email comments to 49 hours, and was forced to re-run the webinar on September 17 due a technical problem on September 16.

Participants in the webinar noted that there was no response from the CDC staff presenting the webinar to any comments that were made during the webinar, nor was there an attempt to answer any questions posed by webinar participants.

In parallel with this, CDC released the draft guideline to the stakeholder review group on September 14, 2015, with a response deadline of October 1, 2015. Comments on the draft guideline were solicited in the form of a spreadsheet. CDC noted that it would compile comments from all sources, de-identify them in terms of their source, and post them on the CDC website on or around October 23, 2015. Stakeholders will be able to participate in a telephone review of this information on October 21, 2015.

Following compilation and consideration of the comments, a group of three physicians will advise CDC on revisions to the guideline. CDC anticipates issuing the final guideline in January, 2016.

An “evidence-based guideline” without an evidence base


On September 29 and 30, 2014, the National Institutes of Health held a Pathways to Prevention workshop on The Role of Opioids in the Treatment of Chronic Pain. Prior to this workshop, experts compiled the relevant available evidence through an exhaustive search of the literature. This compilation formed the basis for scholars who, at the workshop, reviewed the evidence of benefits and harms resulting from the use of opioid treatment for chronic pain. Following the workshop, an unbiased, independent panel developed a report summarizing the current state of affairs with respect to research into opioid treatment of chronic pain. Perhaps that report, released on October 2, 2015, is best summarized by this statement from its conclusion:

“What was particularly striking to the panel was the realization that there is insufficient evidence for every clinical decision that a provider needs to make regarding the use of opioids for chronic pain, leaving the provider to rely on his or her own clinical experience.”

Despite this statement from the panel’s report, we were struck by the fact that, only three months later, CDC issued its request for applications to develop “an evidence-based guideline”. We wonder how CDC could be calling for an “evidence-based guideline” when the National Institutes of Health, after a considerable investment of time and money, had just concluded that there was, in effect, no evidence. We also wish to note that a group of pain management experts, led by the Academy’s current executive director, worked with CDC employees in 2012 and 2013 to review existing opioid treatment guidelines, and concluded that all of them were based on very sparse evidence—that they represented “consensus” guidelines, not “evidence-based” guidelines, because there was insufficient evidence on which to base a guideline.

In its draft guideline, CDC acknowledges just how weak the evidence is. The draft guideline provides twelve recommendations for prescribers, and rates the evidence base for these twelve guidelines as being of “low quality” in five cases and as being of “very low quality” in seven cases. Yet, in another puzzling twist, the draft guideline also rates eleven of the twelve recommendations as “strong” and only one as “weak”. In our view, a recommendation based on “low” or “very low” quality evidence should hardly ever be a strong one, as it essentially represents an expert opinion, rather than a conclusion drawn from evidence.

Makeup of groups advising CDC on guideline development

Although CDC has not been transparent about the members of the Core Expert Group that helped it develop the initial recommendations, the Stakeholder Review Group, or the three experts who will assist it in developing a final draft, we are privy to this information because we are one of the stakeholder groups invited to review the draft. We find the makeup of these groups both puzzling and concerning. To wit:

Core Expert Group: This group of 17 individuals contains one person who is a bona fide pain management expert—Dr. Jane Ballantyne, a retired physician most recently from the University of Washington. The remaining members include five non-physicians and eleven physicians from a variety of medical specialties. For instance, one is a retired cardiologist who works for a state health department, while another is an emergency physician and medical toxicologist who, by virtue of his specialty, treats primarily acute pain and overdoses, rather than chronic pain. Another is a neurologist who is best known for his nationwide advocacy of efforts to markedly curtail opioid prescribing. In sum, this is a panel filled with individuals who are on the record as opposing the use of opioids to treat chronic pain in nearly all circumstances. By virtue of their work, they focus on the potential harms of opioid treatment without focusing on the potential benefits—which is not surprising, given that they come from backgrounds that do not expose them to people with pain who are successfully treated with opioids.

Stakeholder Review Group: Eighteen groups are identified as stakeholders, and each of those stakeholders has identified a point person. Here, the representation of pain management organizations is somewhat better: six of the 18 groups are specifically pain management provider organizations. Another nine groups represent various medical specialties in which pain is prevalent; two represent people who have chronic pain; and one is an organization that has been prominent in efforts to curb opioid prescribing across all patient groups.

Final Review Group: This group consists of three physicians, one of whom is a pain management specialist. The remaining two members are an expert in outcomes research and healthcare communication, and an emergency medicine specialist and medical toxicologist who has published extensively with the toxicologist previously identified as a member of the Core Expert Group. Interestingly, this individual’s website lists her research expertise as, “Evaluating methods to limit initiation of new opioid users and modify opioid misuse through interventions in the ED, regionally and nationally.” We are struck by two facts here: this has very limited applicability to the treatment of chronic pain, which is the supposed subject of the guideline; and that this is a public statement that the primary goal of her research is to reduce the total number of opioid prescriptions written, a fact that is inconsistent with the effort to develop a guideline addressing the prescription of opioids to manage chronic pain.

These groups, charged with developing a guideline on how best to use opioids to treat chronic pain, are overwhelmingly dominated by individuals with no apparent expertise in the subject, nearly devoid of groups representing and advocating for people with pain, and studded with a number of individuals who are publicly on record as opposing the use of opioids to treat most types of chronic pain. This leads us to our next source of concern.

Potential sources of bias in expert groups

In its draft guideline document, CDC describes at length the steps it took to seat an unbiased panel, stating that it considered not only bias associated with employment as a consultant by pharmaceutical manufacturers, but also public statements made by experts, and a number of additional sources of bias. CDC asserts that it has succeeded in identifying an unbiased panel.

Yet, in the disclosures found in the CDC document, it is noted that Dr. Ballantyne, the only pain management expert in the Core Expert Group, has served as a paid consultant to a law firm that has aggressively shopped, to various levels of government, lawsuits against opioid manufacturers, alleging that those manufacturers are responsible for substantial harms to those government entities, resulting from adverse effects of opioid treatment that, in turn, resulted from illegal and/or inappropriate marketing practices by those manufacturers. If the CDC was going to such great lengths to seat an unbiased panel, they should have easily identified that this law firm would undoubtedly be aided in litigating its cases by the establishment of a CDC clinical practice guideline recommending severe restrictions on the use of opioids.

Two members of the Core Expert Group, two designated reviewers in the Stakeholder Group, and one of the three experts assisting with the final draft of the guideline, all are members of the board of directors of an anti-opioid lobbying organization named Physicians for Responsible Opioid Prescribing. This group has been extremely active in attempts to limit opioid use, including a Citizen Petition effort to convince the US Food and Drug Administration (FDA) to change the label indications for extended release and long-acting opioids so as to limit their approved use to no more than 90 consecutive days and to doses at or below the equivalent of 100 mg of oral morphine daily, for all persons with non-cancer pain. It should be noted that FDA denied this Citizen Petition on the basis of its review of the scientific evidence, opting instead to make minor, but still significant, changes to those label indications. Specifically, FDA found no evidence supporting either a duration or dose limit on these medications. (A copy of FDA’s decision and its explanation is attached.) One of the recommendations contained in the draft guideline is that opioid doses above the equivalent of 90 mg of morphine daily be avoided.

It also should be noted that a long-time employee of the CDC’s National Center for Injury Prevention and Control, the home agency for this guideline, is a former member of the board of directors for Physicians for Responsible Opioid Prescribing; his name appeared on the letterhead used to submit the Citizen Petition to FDA. The extent to which this individual participated in the guideline development process is unknown.

It is our contention that, if CDC intended to exclude experts who may have displayed a bias through their public statements and professional activities, it failed. Several members of all three expert groups have written and spoken extensively and inaccurately about a supposed lack of utility for opioids in treating chronic pain, and several also have consulted with government agencies, non-governmental organizations engaged in addressing prescription drug abuse, and others, suggesting ways in which to limit opioid use. It is not known to us if any of these individuals might also have consulted with for-profit entities such as workers’ compensation insurance companies.

We remain concerned that the biases of expert consultants have not been fully disclosed, and that some members of these groups perhaps should have been excluded.

Unnecessary secrecy and extremely limited opportunities to provide comments

We acknowledge that, because the document in question is a guideline, and not a proposed rule, the ordinary standards for obtaining and considering feedback from anyone who wishes to comment do not apply. We also note that members of the Senate Health, Education, Labor, and Pensions Committee have very recently expressed concern about government agencies using a guideline development process as a means of circumventing the standard requirements for transparency and public comment (http://www.help.senate.gov/chair/newsroom/press/senators-challenge-department-of-labor-regulatory-actions). That said, we are at a loss to explain the extraordinary secrecy and extremely limited opportunities for comment attached to this guideline development process.

Within both the medical and regulatory fields, it is axiomatic that transparency and vigorous debate considering a wide variety of viewpoints produces the best results. To that end, when most government regulatory bodies propose new policies, they fully disclose the expert consultants advising them, and they accept comments from a wide array of sources, allowing at least 30, and more often 90, days to receive those comments. This allows all stakeholders concerned by the content of the proposed policy to a) be aware of the proposal so they can ensure that their concerns are communicated; and b) have time to carefully consider and discuss the proposals so that they can offer well-reasoned comments and suggestions for approval. Due to the strict secrecy and limited participation in the development process established by CDC in this case, neither of those was possible, except as it concerns the expert groups.

Consider:
• To this date, CDC has not publicly identified the members of any of the three expert groups
• Every communication we receive as a stakeholder group reminds us to maintain confidentiality with respect to the content of the draft guideline
• The comment period provided to webinar participants was extraordinarily limited, to such an extent that it was challenging even for experts in this arena to construct well-reasoned comments in time to submit them
• There will be no further review by stakeholders after the next draft of the guideline is written
• Comments received by CDC will be stripped of information identifying their source, and may also have their content edited so as to allow presentation of a summary of the comments, rather than the actual comments. This contrasts sharply with the practice of regulatory agencies that post all comments, with attribution, on their websites.

In the end, this guideline doesn’t give us anything we don’t already have

As our prior work with CDC demonstrated, there is no shortage of clinical practice guidelines, issued by a variety of professional organizations and regulatory bodies, with a variety of patient populations in mind. All of them are consensus guidelines, reflecting primarily the opinions of experienced clinicians because of the paucity of evidence regarding long-term use of opioids to treat chronic pain. The recommendations contained in the existing guidelines vary to some degree, but most of them are consistent with the recommendations in CDC’s draft guideline. So what have we accomplished, if CDC issues another such guideline? In one sense, we will have achieved nothing, because it won’t contribute something new to the discussion. In another sense, though, the potential for unintended negative consequences for people with pain is substantial. Experience with similar clinical practice guidelines has shown that many clinicians treat them as rules, not as guidelines, and that a substantial portion of primary care providers (the stated targets of this guideline) will simply opt to stop prescribing opioids to their patients with chronic pain. What will these people do to address their pain?

Our request

In light of the concerns we have detailed here, we respectfully request that your committee look into CDC’s actions with respect to this guideline development process. We think that questions need to be asked and answered, with respect to: the poor-quality evidence underlying these “strongly recommended” “evidence-based” guidelines; the process of selecting experts to participate in the various groups involved in developing these guidelines; potential sources of undisclosed bias from a variety of sources; the implications of CDC issuing a clinical practice guideline developed without the benefit of appropriate peer review, that could limit access to pain medications for people who benefit from them; and the reasoning behind the lack of transparency and opportunity for comment from the public found in this process. Unless these questions are adequately addressed, the organizations with clinicians who strive to treat chronic pain, and in fact do so with opioids, will not support them but will, by necessity, be forced to actively oppose them, ensuring that clinicians understand why.

As we mentioned above, we believe that this is a situation in which transparency and robust academic debate will produce the best outcome. We urge you to strongly encourage CDC to withdraw this draft guideline and, should they decide to start over, to engage in a process that is more transparent and inclusive of the needs and views of all clinicians and patients—both those with pain and those who misuse opioid pain relievers.

http://paindr.com/good-bad-and-ugly-of-cdc-proposed-opioid-guidelines/