Vasculitis Research Money - Where Does It Come From?
We learned at the 2010 Vasculitis Symposium that the Vasculitis Foundation (VF) is the number one private funder of clinical research concerning vasculitis. The VF has collected and spent approximately one million dollars on research for vasculitis. That is a step in the right direction. But like any lucky coin, there are two sides. Before you count your laurels folks, lets take time to look at the flip side.
For example, where is the government funding going? Take a look for yourself:
Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)
"This table displays the annual support level for various research, condition, and disease categories based on grants, contracts, and other funding mechanisms used across the National Institutes of Health (NIH).
At the request of Congress, the NIH embarked on a process to provide better consistency and transparency in the reporting of its funded research. This new process, implemented in 2008 through the Research, Condition, and Disease Categorization (RCDC) system, uses sophisticated text data mining (categorizing and clustering using words and multiword phrases) in conjunction with NIH-wide definitions used to match projects to categories. The definitions are a list of terms and concepts selected by NIH scientific experts to define a research category. The research category levels represent the NIH’s best estimates based on the category definitions."
Look closely. You will not see "Vasculitis" listed on that table.
Crohns Disease gets 58 million. If you have gastrointestinal symptoms, maybe they will learn something that will help you down the road.
Arthritis gets 259 million dollars, and many vasculitis treatments are the so called "red-headed step children" of treatments that were discovered arthritis research. So perhaps that will yield some results that, in a decade or two, maybe, will trickle down as new treatments for vasculitis patients.
Tourette Syndrome is almost as rare as vasculitis, and they are expected to get 7 million research dollars from the NIH in 2011.
Tourette Syndrome is a great example for comparison. I do not begrudge Tourette sufferers this boon. Instead I ask why are they getting seven million dollars from the federal government? What does Tourette Syndrome have that Vasculitis does not have?
I will give you my answer. Tourette Syndrome has VISABILITY. How may funny actors have portrayed a Tourette Syndrome patient on television, just because it was easy to show the condition. It has its own built in visual aid. You do not have to wonder if someone has Tourette Syndrome, you can tell when they start yelling at you uncontrollably with random expressions.
The number of Tourette Syndrome patients in the United States is known:
"It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics or transient tics of childhood." (NIH: http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm)
The best source of information about Vasculitis statistics is the Vasculitis Foundation, and they can only say that vasculitis is rare:
"All of the vasculitides are classified as rare diseases. A rare disease (also called an orphan disease) is a disease or condition affecting fewer than 200,000 persons in the United States. An estimated 25 million people in the United States have a rare disease. Statistics are not available for many of the diseases." (http://www.vasculitisfoundation.org/node/50)
It is rare, and people are not standing up to be counted. So, there are no numbers to report. When a vasculitis researcher gets an idea for potentially significant vasculitis research, they go to the VF Research Program for a grant, because the NIH does not even have vasculitis on its radar. And yet, the Vasculitis Foundation does:
“For the past 15years, patients living with vasculitis, their families, and their friends have been walking, running, hiking, climbing, golfing, scrapbooking, fishing, writing books, and organizing dinner events and countless other activities to raise more than $1 million for vasculitis research. ...making it the world’s largest private funder of research on vasculitis.” (Vasculitis Foundation Research Funding Report, 2010.)
To paint this with some color, at the Vasculitis Foundation the mission includes research so it is in full color painted broadly across the front door. At other funding centers, you can imagine vasculitis is on a much smaller hand-written list kept somewhere in a side drawer. Out of sight, out of mind. No money means no research. More money means more research, and more research means more advanced treatments and someday, a cure.
So, what can YOU do about this? How can you make your voice be heard? When are YOU going to stand up and be counted?
Here is what you can do...
1) Join the Vasculitis Foundation.
When you sit at home, not being counted, you are not helping make your condition better. Take all the meds you want, eat right, practice tai chi, but all of that will only apply to you.
Do you think the Vasculitis Foundation membership costs too much? Talk to them about your situation. You may qualify for a free membership. Even if you do not officially “join” you should let the Vasculitis Foundation know who you are so you can be counted when the research money gets passed out.
The non-personally identifiable information (a.k.a. “The head count”) from active memberships to the Vasculitis Foundation can and are considered when these big money types at the NIH start counting heads to decide which research projects will get part of the billions of public funding available for research each year. When the VCRC researchers are looking for additional grants in aid, they can cite successful Vascultis Foundation funded studies to help justify their larger studies. By supporting the Vasculitis Foundation, you are actually supporting those future big studies.
Will you be counted as one of 100,000, or will you be one of 1,000,000? Or will you remain anonymous? Which group will be more likely to be counted worthy of receiving research money? Keep in mind the “Anonymous” column gets nothing at all.
2) Do not splinter.
You are not just a vasculitis patient, you are also associated to one of fifteen other specific diagnoses that are counted by the Vasculitis Foundation. Are you forgoing participation in the Vasculitis Foundation in favor of going it alone, or perhaps joining a sub-group for your specific diagnosis? It makes good sense to ALSO join those other organizations. They can provided specific information and support for your list of symptoms. But do not forget the Vasculitis Foundation is the number one private funder of clinical research. By splintering off, you would also be watering down the numbers needed to justify private and public funding of more clinical research.
3) Get involved and stay involved.
Start your own blog. Tell your stories. Go to a chapter meeting. Volunteer to man the booth at health fairs and state fairs, and whatever your chapter decides to do. Be a part of making that happen!
Share information every day about your condition, and also about the Vasculitis Foundation. Yes, go forth, make some noise, tell everyone you know about your condition and get those who care about you to start making noise too.
By promoting awareness and education every day, can you help create the kind of public recognition that will lead to more research, and ultimately a cure.
When we say Sticking Together for a Cure, we mean it. Only by making our collective presence felt can we truly make a difference.
How to join.
Are you a Patient? Are you a Family/Friend? Are you a Medical Professional?
Either pay your dues (either $35/year or $500/lifetime), or make the case for financial hardship, but regardless of how you pay, Join today, or renew your membership with the Vasculitis Foundation:
http://www.vasculitisfoundation.org/vision/join/
Your membership dues go directly to non-profit efforts to promote awareness and education, and fundraising is spent on vasculitis research. Research that will end up providing real world benefits to you, and to others like you.
I started out with the title, "Vasculitis Research Money - Where Does It Come From?" Well, you can stop looking around, because it comes from you. Yes you, the patient. Yes you, the caregiver, the family member, the friend. When each of you makes enough noise, people will pay attention and they will contribute to funding vasculitis research. Either one dollar at a time, or one million, it all adds up.
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