http://www.cnn.com/2007/HEALTH/12/27/ep.cure.child/index.html
HOW TO SAVE YOUR OWN CHILD (excerpts)
NEEDHAM, Massachusetts (CNN) __ Early one summer's evening, five parents gathered at a suburban Boston home. They had wine and fruit tarts, cheese, crackers, and fresh fruit. Laughter and hugs filled the room. But this is one gathering to which you don't want to be invited. These parents have children with brain tumors.
Frustrated with the lack of treatment options for kids, they meet once a month to come up with ways to fund medical research. So far, with no training in fundraising, this band of parents has raised more than $6 million in three years.
Rather than wait for drug companies to do it, they're funding the research themselves.
But Ragnoni says he was "shocked" by the limited amounts of research being done on JPA, which strikes about 600 children each year. "We kept running into dead ends," he says.
It's a problem with many rare diseases. Developing drugs for high blood pressure, high cholesterol, or depression, is lucrative because millions have those diseases. But when patients are counted in the thousands __ or even hundreds __ it's a different story.
A few months ago, a group of parents asked Cheung what they could do to help further his research. "Do you have an extra 2_or 3_million dollars?" he asked them. Gretchen Witt was listening. "I thought he was going to say $25 or $30 million. Two to 3 million is a drop in the bucket!," she says. "I thought, the only thing separating our children from having better odds and really horrible odds is just 2_ to 3_million dollars?" Then Witt saw a story on CNN about a family who raised $3 million through golf tournaments to fund a treatment for their son's rare genetic disorder
Working in three shifts, hundreds of volunteers __ from firefighters to stars of the "Food Network" __ baked 96,000 cookies in two weeks. The cookies, which sold for $30 for a dozen, raised more than $200,000.
Sometimes Witt gets frustrated that parents have to sell cookies, or hold golf tournaments, to fund medical research. "It's totally sad. It's ridiculous. It makes me mad," she says.
* * *
This is the reality faced by CFS patients, too. Although it affects a million Americans, the prevalent myth that it’s "just depression" or "all in your head" makes it difficult to get research funding. Much of the research has been funded by patients themselves – thankfully, some had wealthy families to turn to, and could make a difference for all of us. The patient-funded research found a virus, and although people have been having good results from the anti-viral Ampligen for nearly 20 years, the FDA still has not approved it (as one of the researchers has observed, the FDA could not approve a drug to treat an illness that CDC/NIH didn’t acknowledge; one branch of the government doesn’t call another branch wrong).
Government funds for CFS research have been misused to study other illnesses. After an audit forced repayment, they were misused again! Thankfully, we have some dedicated volunteers (a round of applause for Pat Fero!) who keep making FOIA requests and tracking what "our" money is being used for, i.e., how much is being spent on CFS research and, annoyingly, how much is diverted to researching things that have nothing to do with post-viral ME/CFS. It appears that "our" money is used as a piggy bank to supplement research into other diseases when their own budgets run dry.
Unfortunately for fundraising efforts, we can’t go to donors with the threat "donate or the kid dies" – CFS isn’t generally fatal, except via suicide when a patient gets tired of being disbelieved, wrongly accused, and denied benefits that someone with the same limitations from another disease would get easily. (Though there are exceptions to that, Pat Fero’s son among them.) So, the research remains funded primarily from patients’ disability benefits, their families, their friends who have seen with their own eyes a healthy person deteriorate from a marathoner to someone who can’t walk 50 feet without needing to rest.
If I thought my fellow patients had it in them to bake cookies or play golf, I’d suggest a similar fundraiser, but a CFS patient who puts cookies in the oven often finds "out of sight, out of mind", and doesn’t remember them till the smoke alarm goes off. And even a 5K Fun Run could send most of us to bed for days afterward.
As Gretchen Witt says, it’s sad, it’s ridiculous, it makes us mad. No patient should have to dip into their already below-poverty-level disability check to fund research, yet that’s exactly what’s been happening for 20+ years. Meanwhile, diseases that are not as debilitating or that don’t affect nearly as many patients are readily granted more research funding than CFS.
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