Wednesday, December 2, 2009

The politics of funding


I was putting together the science roundup for the December issue of BLOOM magazine and couldn’t help noticing that six of eight recently published research studies about childhood disability focused on autism.

Given autism affects one in every 150 children, it wasn’t surprising that a large chunk of research dollars would be invested in treating this disorder. But I wondered whether funding to develop treatments for, or improve quality of life in, other conditions reflected how commonly they occurred in children.

I recalled a fascinating fact sheet from the Cerebral Palsy International Research Foundation (CPIRF) earlier this year that compared the prevalence of well-known childhood disorders with the amount of research funding they received from U.S. federal government and private sources.

For example, muscular dystrophy affects one in 8,000 children but received $47 million in federal funding this year. Cerebral palsy affects one in 278, but received only $16 million. Autism, at one in 150, received $105 million.

On the private side, muscular dystrophy research drew $310 million, autism $15 million and cerebral palsy $2 million.

I asked Dr. Mindy Aisen, medical director of the CPIRF, to explain the disparity.

“It’s a matter of access to media and funds for lobbying politicians,” Dr. Aisen said. “At the end of the day, research funding does not equate to prevalence. It’s political, and politics is influenced by the media and lobbying. Cerebral palsy is terribly underfunded proportional to its enormous prevalence – which has gone up dramatically in the last decade as a result of the rise in multiple births associated with fertility treatments and our ability to save premature babies.”

Dr. Aisen noted that Jerry Lewis was a media champion for muscular dystrophy research and “autism exploded on the scene with a huge media campaign by Autism Speaks. They’ve done a phenomenal job of making autism a political issue and God bless them.”

Unfortunately, cerebral palsy doesn’t have high-profile celebrities to take its message to the masses and the CPIRF board chooses to put its money into research rather than lobbying.

Dr. Aisen noted that raising research dollars for autism may better capture the public’s imagination because it’s a disability that isn’t apparent at birth. “Children with autism start out looking great and everyone has the expectation that this delicious toddler will be totally functional – and then at age three parents lose that hope. With cerebral palsy, problems are usually apparent from the beginning. There’s still a huge stigma attached to physical impairment. People see a wheelchair and look away – especially if it’s a child in a wheelchair.”

The marketing of high-functioning autism and Asperger’s is also reflected in the recent spate of movie characters with the conditions. “There’s something very appealing about children who are extremely intelligent, mathematical and computer savvy and the sense that if only we could overcome this problem, they could contribute so much.”

Disparity in research funding also exists between disabling childhood and adult conditions. “In large part children’s conditions are far less well funded than any adult condition,” Dr. Aisen says. “Children don’t have a voice. In the end, people fight for what’s most relevant to them.”

That may explain the explosion of stem-cell research funding for end-of-life conditions like Parkinson’s, Alzheimer’s and stroke, but the lack of a single stem-cell clinical trial for the treatment of cerebral palsy. “Imagine how stem cells might be even more powerful in the highly plastic brain of a baby,” she says. “The lack of stem-cell research for cerebral palsy is mind-boggling.”

Dr. Aisen says we’ve never been closer to scientific discoveries that can benefit children with cerebral palsy. “We have such powerful pilot data and ideas and research talent, we just don’t have the funding for clinical trials.”

Constraint-induced movement therapy (CIMT) – based on the premise that new motor pathways can be laid if a child with one-sided weakness is motivated to use the weak limb by casting the strong one and developing engaging virtual-reality and robotic applications that give the weak side a repeated workout – shows great promise, she says.

“We have the technologies and techniques that we know make an impact and if we just had a bit more research we could really explore how much, when, and what combination of things works best. The National Institutes of Health and National Institute of Neurological Disorders have supported work into CIMT, but it hasn’t reached level-one evidence, which means double-blind, randomized control trials, which are expensive. No one is funding those studies. We need level-one evidence to convince policy-makers and insurers so that this therapy is offered in schools and paid for by Medicaid.”

Dr. Aisen says research into autism and cerebral palsy takes place in unnecessary silos. “We have two major developmental disorders of the brain that have overlaps. Many with autism have seizures and motor disorders (tics, lack of coordination and decreased muscle tone) and a meaningful number of people with cerebral palsy have symptoms that place them on the autism spectrum. We need to talk and exchange techniques and technologies and leverage resources.”

Other childhood disabilities face different funding challenges. Parents of children with Down syndrome worry that if cases continue to decline as a result of better prenatal diagnostic tools and higher abortion rates, funding to study the condition will dry up.

And then there are rare conditions – like that of my son Ben. When he was born, there were only 60 reported cases of Langer-Giedion syndrome in the world. Rare syndromes have no political leverage unless their study can be shown to shed light on more common diseases. For example, one of two genes deleted in Langer-Giedion syndrome is a tumour suppressor – which has made it of interest to cancer researchers.

16 comments:

This is such a powerful article! The numbers tell a fascinating story about the role of lobbyists, marketing, stereotypes, etc. The minimal funding for research into cerebral palsy is sad indeed, considering its incidence. Thank you for bringing this information to light; I wish the media and key legislators would focus more attention on what you have presented here. How could we make that happen?

Wow, this really strikes a cord. Great post. Our son has CP and I do see a tremendous disparity in research support vs other friends who children with autism.

We did go through constraint therapy at the advice of our PT and Neurologist - it had a very strong and positive impact. But we were very close to naysaying it because there was no clinical research for children that gave us comfort that 1) it worked and 2) there were no detrimental effects (especially depression or the like). When we did it, it was a real leap of faith, one I suspect not all parents are willing to make without the numbers.

Epilepsy, too, is one of the most underfunded diseases AND one of the most common. Epilepsy affects nearly 2% of the general population, more than cerebral palsy, multiple sclerosis and Parkinson's disease COMBINED. While 70% of people with seizures are relatively well-controlled with available medications, more than 30% have no control at all. In my own journey with my daughter's epilepsy, I have found it incredibly frustrating and depressing how slow the research is done and how difficult it is to raise awareness of just how terrible the disease can. In fact, not many people know that just as many people die of epilepsy as breast cancer, yet breast cancer gets over five times the amount of research dollars!

Hi Galen -- Thanks for your message. The numbers (re prevalence compared to funding) are American ones, so it would be challenging to promote it here in Canada without Canadian equivalents (which I think would be much harder to produce). I think it would make a fascinating New York Times story. However, when I mentioned to my newpspaper husband, he said they had probably already done something like that. I know there have been stories about the success of Autism speaks, the celebrities involved and the rise in autism funding, but I haven't seen anything that compares the funding for different childhood conditions. Have you?

Hi Julie -- I had the same reaction when I first heard about constraint therapy (just the name is offputting). I wish you could have heard Dr. Aisen talk about the potential of that therapy -- when combined with cool video games and robotic applications that encourage kids to move their weak arm repeatedly in ways that build strength and control. And she felt the concept could be applied to other areas in which neuro development isn't as it should be (for example, for kids with autism who have social deficits). Did you see the article in the Times about the impact of dance on a man with CP -- in terms of changing the way he walks? It's listed under Seen online on this site. Cheers

Elizabeth -- How much do you think the old stigma/stereotypes around epilepsy influence research funding? Or perhaps it's just that people don't want to acknowledge the 30 per cent for whom seizures are intractable. I think the average person would find that shocking. But as with other aspects of disability, sometimes people just don't want to hear about it -- especially when there isn't an easy answer. And you're so right about how "sexy" breast cancer has become with the pink ribbon marketing around fundraising. Thanks for sharing.

Great article Louise, some really eye-opening statistics. I'm very aware of how hard it is to raise funds for epilepsy... when you see the thousands of people walking/running etc. for breast cancer, it's hard not to feel a little envious. Elizabeth's point about epilepsy vs. breast cancer mortality is news to me, but supports my impressions about "popular" charitable causes.

It would be interesting to know how Bloorview programs/funds are allocated to the various disorders. I suspect the statistics would be surprising. Perhaps a subject of a future article?

And many handicapped children have no diagnosis, rather just a description of their deficits.

Cerebral Palsy is VERY prevelant but very hush hush...I bet many people don't realize that Ashton Kutcher has a twin brother with CP and when approached by a national non-profit about speaking out about CP, he declined, we have Collin Farell has a son with CP, we have Cheryl Hines, who's nephew has CP all decline to speak out publicly on our cause....I am a mother and advocate of a child with CP, it saddens me very much that in the year 2009, that there is little more known about CP, then there was 50 years ago. Those new prevelance numbers from the CDC are only from 3 states, Wisconsin, Georgia, and one other state I can't remember off the top of my head. Can you imagine what the prevelance may be if we had a national registry? WE don't even have that...Congress has been fighting and asking for stimulus money for the last several years, but has declined NUMEROUS requests from Reaching for the Stars A Foundation of Hope for Children with Cerebral Palsy, for a measly $10 million allocated to the CDC to do a proper National Surveillance and Epidemiology study. I believe that CP is not looked at merely because we have not found our Jenny McCarthy. We have our equivelant of Autism Speaks, in RFTS, a parent led, grass roots organization, however, parents of CP children are usually very bogged down with various things, there are full time working parents that have to come home and have to care 150% for their child who may not walk, or communicate, bathe him/herself, need tube feedings etc. We are in fact very exhausted at the end of the day. When our children go to sleep, they are usually awaken by night cramping in their extremities, Reflux issues, or sleep apnea. It's a lot to ask those parents to do more then they are doing. I'm a stay at home mom of a kindergartner with CP, and I still find it hard to keep up with advocacy. We have foundations like the UCP, that only give less then 40% of their funding to CP, the rest of that money goes to undiagnosed disorders, and other genetic disorders, this CP fight has been a fight in this country for more then 50 years, and it's time for our house of appropriations to start allocating more to our children. Yes Autism is very prevelant, however how can you ever justify $128 million a year in funding, verses $18 Million in funding (numbers from the NIH) how do we tell our children every day, who struggle every little bit as any other child that they are not worth their governments time? Does the government not understand the financial burden they will face when these children 1 in 278 grow up and have to go on medicaid, social security etc...because there wasnt enough intervention as children to ensure they can hold a full time job?Fact is that the lifetime cost of a child with CP is over $1 Billion more then the average person, because of all the sergeries, interventions, therapies, nutritional supplements etc...you know who pays for most of that? you the tax payer, because when moms and dads can't afford health insurance or when they have hit their lifetime max...mom or dad or both have to quit their jobs to get medicaid for their child. Government agencies will TELL the parents that's their only hope. Each month on verage my insurnance company is billed $900 for Pt, $1050 for OT, and on average about $100 for what ever doctor we've seen that month...not to mention the prescription money which is likely about $500.....that's per month, every month, for the rest of his child hood. That's one day a week of OT, and 2 days a week of PT. If we didn't have insurance we'd certaily have to be on medicaid.

Many people do not realize the prevelance of CP and it's very frustrating to parents like me that have a child with CP. Those stats you posted are very correct, however those numbers are only based off of 3 states, Wisonsin, Georgia, and another state I can't think of off the top of my head. Reaching for the Stars A Foundation of Hope for Children with Cerebral Palsy, was founded in 2004, to start a movement to try to attract more funding and more education for children with CP. I as a parent have written many legislators about CP, and usually I get a letting thanking me for my support about Cystic Fibrosis research, which really begs to ask the question.."do they really read our letters?" For the last 4 years or so RFTS has been to capital hill lobbying to get the $10 Million from the house of appropriations to give to the CDC to get a national surveillance and Epidemiology study for CP, which doesn't exist for CP currently. But it is ignored. RFTS is also the organization that stepped up and raised the money for the CDC to have the first ever prevelance study, which had NEVER been done before. Boy were they shocked when the previous estimate of 1 in 666, was really 1 in 278. Their logic of thinking is that this is where Autism Speaks started...they got the numbers to WOW the public, to reel them in...and it's just not happening. Even celebs with family members with CP, decline Ashton Kutchers twin brother has CP...he states they are astranged, so therefore wants nothing to do with it. Then we have Cheryl Hines, who has a nephew, a very close nephew with it...she has also declined to talk about his struggles. The NIH reports that CP recieved about $18 Million in funding, while Autism recieves more then $128 million. We have foundation like the UCP, who you'd think would give all their money to CP research, when in fact they give less then about 40% to CP research. The rest goes to other undiagnosed disorders or other neuromuscular disorders. In the last 50 years we have not come very far in our research...we still to this day can not figure out why 1 preemie gets CP, and another at the same gestational age and weight doesn't. And now that preemies are being saved at as little as 23 weeks gestation, the CP numbers are likely to keep going up, up and up....The time for research is now. The average liftime cost of a child with CP, will be about $1 Billion more then the average child, due to the numerous surgeries they have, medications, treatments for spasicity, Physical Therapy, Occupational Therapy. Most of that money will come from tax payers. When insurance companies refuse to cover kids with "pre-existing conditions" and when the life time max are hit, parents have no choice but to quit their jobs, to go on medicaid..true story, just had a friend that had to do that very thing..she made too much money working to get medicaid, no insurance company would touch her 1 year old with CP, so she was told BY MEDICAID to quit her job, so she could qualify...that's what she had to do. Going without seizure medication, spasicity treatments, and nutritional supplement is not an option. The government needs to look at that 1 in 278, and realize that many of them will grow up turn 18 and immediately start to collect Social Security and medicaid, because the leg work wasn't done correctly as children to allow them to live an independent life. Thank you so much for blogging about this, and for bringing attention to a cause that deserves much much more.

Sorry I'm tardy in my replies. Re Bloorview programs and funding. Like all Ontario hospitals, our funding comes from the Ontario government, and isn't always allocated by disorder. And our service programs aren't all disorder specific (e.g. our child development program covers all developmental disabilities, including cerebral palsy and autism). So it would be hard to do that kind of analysis. But I'm sure it would be interesting. Will consider in a future post. Thanks for writing!

Michelle -- I'm very grateful for the time you took to share your expertise and experience on this topic! It sounds like you're a tremendous advocate for your child and all children affected by cerebral palsy. I wasn't aware of the celebrities you mentioned having family members with CP. Dr. Aisen did mention that outreach to a number of celebrities had been made and had not been successful. I find that very disappointing. I hope you will continue to follow the BLOOM blog and share your insights with us. Best wishes to you!

Although kids disabilities don't get the funding and recogntion that adults do, neither of these compare to the lack of attention and funding that the elderly receive.

I have always wondered why CP does not have more recognition. I have known more kids with CP than with many other disabilities that are getting the publicity and therefor are on many folks' radars. Not so CP. It is up to those families with CP to put together an effective organization.

One reason that I believe CP, epilepsy and some of the other common, not well publisized conditions, do not have the strong advocate/support groups is because the categories have many subcategories with groups that have resources. Preemies who may have CP find preemie support groups more readily available. Multiples who are preemies and/or have CP often find that the multiple groups are more what they want. Learning disabilities, autism, and other behavioral issues that mind be the result or part of the CP or epilepsy also split up those who have kids in those categories.

Here is a link to more information about the genetics of Langer-Giedion Syndrome that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: http://www.accessdna.com/condition/Langer-Giedion_Syndrome/708. There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA