When Essential Pain Research Is Blocked By Lack Of Funds

Today's post from hartfordbusiness.com (see link below) looks at modern pain research from the viewpoint of specialists in one U.S. state but this story reflects the situation across the USA and the rest of the world. As always, the will is there, the people are in place and there's no lack of enthusiasm but putting that all together and coming up with a viable pain research strategy is always dependent on the funding that can be found to support such work. These days, companies that fund research projects are faced with choices that Sophie would instantly recognise:- which disease deserves the most financial attention? This article promotes the idea of collecting and collating patient data to come up with the real statistics behind the chronic pain situation in the modern world but there's a huge gulf between the usefulness of genuine research projects such as this and the amount of money available to pay for it. Worryingly for nerve patients, pharmaceutical companies are beginning to pull back from opioid-alternative, pain medication research because nothing is working and there's no real breakthrough - so they put their money where certain profits can be made. Isn't that the way of the world! For that reason, exciting projects such as this proposed by Connecticut pain specialists, has to join the line for research funds and fight tooth and nail to get projects off the ground. Until financiers wake up to the fact that chronic pain lies at the bottom of most modern diseases, they won't realise that it's probably the most worthy research cause of them all. In the meantime, patients like us have to make do with failing drugs and treatments that have been around for 50 years - to the immense frustration of all involved in trying the manage the chronic pain epidemic.

CT scientists want pain research to finally get its due, and funding July 16, 2018

Reinhard Laubenbacher, a cell and computational biologist with joint academic appointments at UConn Health and Jackson Laboratory, is spearheading a new research consortium that will focus on advancing scientific understanding and treatment of pain.

Medical science is a noble calling, but it's often extremely competitive, and the next batch of research funding is always top of mind.

To succeed, researchers must seize advantages when they see them, says Dr. William Zempsky, head of the pain and palliative medicine division at Connecticut Children's Medical Center (CCMC) and a professor at the UConn School of Medicine. That may mean carving out a niche in a field of study that isn't quite as crowded.

Call it low-hanging fruit, but the kind that could one day change patients' lives.

"That's how you develop a career," Zempsky said. "Researchers, just like everybody else, are opportunists."

Indeed, as Zempsky tells it, that's part of the story of how he built his own career.

"When I first started here, I was probably the only one doing pain research across much of the UConn campus," he said.

He opted to specialize in sickle cell disease and look for ways to evaluate and treat the severe, unrelenting pain it causes. It was a rare niche at the time, and to an extent it still is.

But research on pain, and potential remedies to treat and deal with it, will be ratcheting up in the state with the launch of a new research and education consortium that could potentially make Connecticut ground zero in this area of medical study.

The Connecticut Pain Consortium is being led by Reinhard Laubenbacher, a UConn Medical School cell and computational biology professor who heads the college's Center for Quantitative Medicine. He's been brainstorming for the past few years how he might make a bigger mark on the research world.

"In pain research, it's still by and large wide open," Laubenbacher said.

That could be slowly changing, as the opioid epidemic brings urgency to pain science and the need for alternative treatments. Congress responded recently by allocating hundreds of millions of dollars in additional pain research and addiction funding.

The hope is to bring some of that funding to Connecticut.

So far, members of the fledgling consortium include UConn Health and Jackson Laboratory, where Laubenbacher also holds a faculty position. The hope is to secure further commitments from universities, hospitals, insurers, and perhaps drug companies, following a pain symposium planned for later this year

Laubenbacher already has an advocate in Zempsky at CCMC.

Patient data

A key aim of the consortium is to increase the volume of both basic and translational pain research in the state by creating data gathering and sharing programs, and convening diverse teams of researchers to seek grant funding to study them.

The idea is that more high-quality datasets about patient pain experiences, treatments and outcomes will help drive science forward.

Though there are pain datasets available to scientists, Connecticut researchers say there's room for many more, and that sometimes datasets are proprietary and inaccessible to a wider population of scientists.

"In my mind, data should be available to anybody in the world, but they aren't," Laubenbacher said.

Angela Starkweather, a UConn nursing professor and associate dean who studies pain, wants pain research to catch up to what's been done for other conditions.

For example, researchers have done a good job gathering data showing parts of the country, and world, where higher concentrations of people are suffering from cardiovascular disease and heart attacks. But such "epidemiological" data, which aims to find causes and risk factors in a given population, have not been collected to the same extent for pain.

"If you could measure the amount of people in pain in the same way and how it impacts them, we could know the conditions they live in, how we could improve them," Starkweather said. "Those are the kinds of questions we can't ask right now because we have nothing. We're way far off in terms of having any access or ability to make any assumptions."

She acknowledges that a competitive environment for research dollars does sometimes curtail collaboration among scientists at different universities or institutions.

"That often is the stimulus to not collaborate and get things done at a local level," she said. "That's the bad thing about federal funding for science."

CCMC's Zempsky said medical research is moving in the direction that will require more participation from both patients and providers. That comes with privacy concerns, though researchers are able to "deidentify" data for a given patient.

"That's where medicine is going, which is to set up these registries," Zempsky said. "I would hope one day everyone could be part of a deidentified registry."

What sorts of Connecticut datasets might Zempsky want to see built?

"Maybe we start a registry where patients give a blood sample so we could do genetic typing, then we could look at how genetics determine outcomes of major surgeries," he said.

Zempsky, who is also on the board of physicians for Connecticut's medical marijuana program, has a second idea.

With more than 26,000 patients now registered in the medical marijuana program, there's significant potential for mining pain data.

It would take collaboration between multiple stakeholders to pull off, but when marijuana patients visit a dispensary, they could enter health information into a tablet.

"We can learn their diagnosis, what products they're using and what their outcomes are and we can track those longitudinally," Zempsky said. "The data on medical marijuana is still really in its infancy."

Growing spotlight, funding

One big challenge for pain researchers is that available funding from the National Institutes of Health (NIH) has been relatively small.

Other research disciplines, particularly cancer, have dwarfed pain research both in Connecticut and in the U.S.

Not many would argue that cancer doesn't deserve big research dollars, but some, including the American Pain Society, have noted a mismatch between the societal impact of pain and the amount of funding it receives.

In 2011, a landmark National Academy of Medicine report estimated that chronic pain costs as much as $635 billion per year in medical expenses and lost productivity. Meanwhile, NIH funding for chronic pain the year the report was released was less than $356 million, growing to nearly $421 million in 2017.

The report called chronic pain a "significant public health problem" that increases morbidity, mortality and disability rates, and is not yet fully understood by science."

"Many shortfalls in pain assessment and treatment persist despite humanity's intimate familiarity with pain throughout history, modern appreciation for the complexity of its origins and the diversity of its effects, and the not insubstantial risk that any one person may have serious or chronic pain at some point," the report said.

There's some additional hope on the horizon. Earlier this year, NIH announced it would add $500 million to its available funding for research on opioid addiction and pain, nearly doubling its 2016 total of $600 million.

It was nice timing for Laubenbacher, who at the time the NIH announced the additional money, was already deep in his planning efforts for the pain consortium.

UConn researchers are currently involved in pain-related projects that he estimates have around $10 million in NIH funding, Laubenbacher said. He hopes the consortium will lead to that figure being higher in the future.

Correction: A quote in an earlier version of this story was inaccurately attributed to Reinhard Laubenbacher and has been removed.

http://www.hartfordbusiness.com/article/20180716/PRINTEDITION/307129945/ct-scientists-want-pain-research-to-finally-get-its-due-and-funding