Apr 25, 2011

Funding POTS Research and Organizing the POTS Community

Most of us POTSies know how hard it was to get diagnosed, because most doctors have never heard of POTS.  And once we were finally diagnosed, it was probably really hard to find a doctor who really had expertise in treating POTS.

We need to raise POTS to the same level of public awareness as other chronic illnesses like Multiple Sclerosis and Parkinson's Disease.  There are more people currently living with POTS people in the United States than Multiple Sclerosis and Parkinson's combined, yet hardly anyone, including medical professionals, has ever heard of POTS.

Estimated Prevalence of Diseases in the United States:
Multiple Sclerosis (M.S.) - 250,000 people
Parkinson's Disease - 500,000 people
Postural Orthostatic Tachycardia Syndrome - 1,000,000 people

Where are the research dollars going?
Check out this graph prepared by the National Institutes of Health (NIH), which summarizes the amount of NIH funding going towards specific diseases in 1996. The NIH is the source of almost all federal research dollars spent on medical research. Notice that POTS and other forms of Dysautonomia don't even make the list. Interestingly, ear infections (Otitis Media) get 10 million dollars a year in federal research dollars.

Now don't get me wrong, I think all of these health issues deserve our serious attention and substantial government funding. I'm not saying take some money we are spending on ear infections and spend it on POTS instead. I'm saying, take some of the money we are wasting on corporate tax breaks for insanely profiting companies like General Electric and spend it on POTS. General Electric had $14.2 billion dollars in profits in 2010, and received a $3.2 billion dollar tax benefit - as if they needed the extra money with the billions in profits they made in just that one year. In fact, we don't even need the whole $3.2 billion from GE's corporate welfare... oops, I mean tax breaks, to study POTS. Maybe just 1% of that, which is $10 million dollars. And us POTSies have probably funded a few million dollars of GE's profits since they make most of the MRI machines in the world.

Why doesn't POTS/dysautonomia make the NIH list even though there are more people with POTS than some of the other well known chronic diseases? I had one doctor tell me "it's because those other disease are more serious." Really? I know people with M.S. who can run marathons (and god bless them for that!), but I don't know any POTS patients doing that. I know many people with diabetes who can get up everyday and go to work and live a totally normally life. I don't know many POTS patients who can go to work and live "normally." So I'm not saying there aren't people with M.S. and Diabetes who are seriously suffering (I know some of them too), but if we based federal research funding on suffering alone, then things like Familial Dysautonomia (Riley-Day Syndrome) should be at the top of the list, because those poor kids only have a 50% chance of reaching age 30, and it's not an easy 30 years for them if they do make it that long.

Federal medical research spending, like everything else in Washington, D.C., is based on who makes the most noise. You know the saying - "the squeeky wheel gets the grease." There are some very well greased wheels in the medical arena. Well known diseases like cancer and AIDS get tons of funding. While diseases the public is not talking about, like POTS, don't get much. Why is this? Well, you've all probably heard of the American Cancer Society and the AIDS Foundation, but how many of you, before you had POTS, ever heard of a non-profit working on POTS awareness? That's what I thought.

We POTSies haven't organized ourselves into a lobbying and educational force to be reckoned with like the AIDs groups, and the cancer groups and the M.S. groups... yet. There are some wonderful people who have started to get the ball rolling. The good folks at the Dysautonomia Information Network (DINET), the Dysautonomia Research Foundation and the Dysautonomia Foundation (which focuses on Familial Dysautonomia) have laid the groundwork by starting non-profits and putting information out into the world to try to raise awareness about POTS. But we clearly need a bigger better effort before everyone in America knows what POTS is, just like everyone in America knows what M.S. is.

Our POTS/Dysautonomia organizations aren't raising enough money for research. This is not a criticism, just an observation. I have spoken with the head of one of the larger POTS non-profits, and I won't say which one, but they only raise about $5000 per year. This is probably what the MS Society spends on postage every month. For example, in 1999 the National Multiple Sclerosis Society gave out $22.5 million dollars in research grants. Add this to additional funding sources, like the National Institute of Health and smaller private organizations and non-profits that work on MS issues. So how can a disease that only impacts 250,000 people raise so much money for research? Because the are WELL organized and WELL funded.

How do we get the POTS community to be well organized and well funded?
I think we should look at what other successful health based non-profits have done, and try to learn from them.

I also think we need to reach out to the pharmaceutical companies. There has to be someone making money on us, with so many of us taking Flourinef and Midorine. And those compression stocking companies probably make money off of POTS too.  Maybe a health insurance company would be interested in sponsoring us - if we find a cure for POTS, maybe they won't have to pay for so many ER visits for us anymore. In America, your cause is legitimized when you have a big national corporate sponsor. Sad, but true.

So out of the 1,000,000 POTS patients, someone has to have a relative or a friend working at some big pharma company, a health insurance company or one of those medical compression stocking companies.  And even if we don't have a direct connection, there is no reason we shouldn't ask for funding anyway.

Why isn't the POTS community organized yet?
Well, to be fair, POTS was only given a name in 1993, so it's not like patients could rally around a cause when the cause didn't even have an agreed upon name before that.

Also, about half of the 1,000,000 American's who are estimated to have POTS, don't even know it.  They are either undiagnosed or misdiagnosed with something else.  So that leaves 500,000 of us to get to work and organize.

I also think part of the reason it is hard to organize POTS patients is because so many POTSies are young teenagers and 20 somethings, and maybe they don't know how they can get involved. It's also hard to get involved when you are stuck laying in bed all day feeling like crud. But with the internet, now you can get involved even if you're stuck in bed. Teens are probably better than anyone at using social networking to organize for a cause, so get to work. Make a blog, start a Facebook group, start a mass mailing to your Senators asking for NIH funding.  And your parents, other relatives and friends can help us organize too.

What should we do?
Here are some things I'd like to see happen in the POTS community:
1) a targeted effort to reach out to cardiologists, neurologists and family doctors on how to diagnose and treat POTS - since I think most POTS patients probably end up at one of these doctors when they first get sick and are searching for a diagnosis.

2) more media coverage of POTS - any of us can do this! call your local hometown newspaper, your school newspaper or your local TV station. Tell them you are trying to raise awareness about an unknown disease that affects 1 million people in the U.S. See if they will interview you. Show them the recent Wall Street Journal article on POTS and Dr. Levine's NASA research.

3) reaching out to medical schools and asking that POTS diagnostic criteria, appropriate tests and treatment be included in the curriculum

4) providing research funding for the existing POTS research centers like Mayo Clinic, Cleveland Clinic, Case Western, Vanderbilt and Dr. Levine's team in Texas

5) providing funding for medical students and residents to train in the field of autonomic disorder - we need more doctors working on this!

6) providing grants for educational conferences and training seminars regarding POTS and related forms of dysautonomia, to encourage existing doctors to learn more about the subject

7) providing funding to doctors willing to open up POTS speciality centers in regions that don't currently have one - so all of us don't have to drive half way across the country to see a POTS expert.  This funding could be used to train doctors willing to open up POTS/autonomic speciality centers in new regions of the country and possibly to help them purchase special testing equipment (such as Daxor blood volume testing machines, Thermoregulatory Sweat Testing Machines, QSART, hemodynamic test equipment, tilt tables, etc.)

That's just off the top of my head.  I'm sure if we got a bunch of POTS doctors and patients and caregivers in a room, we could think of more things that need funding and more ways to make it happen.

Perhaps we need a National Conference on POTS.  I know the doctors have medical conferences all the time, but I'd like to see one that involves patients as well.  This could be a group brainstorm on how to get POTS the attention it deserves.

Please send me your thought on this.  Would you be interested in participating?


Dr. Levine's POTS exercise protocol, based in part on his work with NASA astronauts, has received press coverage in the Wall Street Journal!

This is good news for POTSies.  The more media coverage POTS receives, the easier it will be to get funding for desperately needed medical research into the underlying causes of POTS and viable treatments.

I have been waiting several weeks to hear back from Dr. Levine's team, to see if I can be accepted into their POTS exercise research program.  Stay tuned...