The MDA’s 44th annual Labor Day Telethon was on the TV. Since my family and I were on the local (Mobile, AL) MD Telethon several times, and my mom served a year as Mobile MDA’s president, I thought I should comment.
Many activists attack the MDA for fundraising based on pity. It’s true that their 1950s attitudes about disability can be really grating; the Telethon is decidedly stuck in the past, both in how they see us and their entertainment–it’s always had the kind of acts you would expect to see on The Tonight Show with Johnny Carson; this year’s guests included Tony Orlando, the new Menudo (sans Ricky Martin) and Charo. But what sticks in my craw isn’t that as much as the misleading nature of the Telethon.
Every year the Telethon gives the impression that the MDA provides significant help for the daily lives of the MD-diagnosed people they’re showing on TV, and most people (even legislators) believe this. But the MDA does not focus on assisting us on the ground, and this is my main beef with them. When I was sick and at death’s door and really needed help, they wouldn’t lift a finger. Chris Wiggins was my oldest friend, and AN MDA POSTER CHILD, and, unfortunately, like so many others in his situation, Medicaid arbitrarily stripped him of the nursing care at age 21. This ultimately led to his death. Despite the fact that Chris and his photo on posters, along with years of tireless work by he and his mom at fundraisers, probably kept the local branch open, when they really needed help, MDA declined. They wouldn’t even help raise awareness of the problem of inadequate home care for “Jerry’s Kids” over 21. Chris, and too many of his compatriots with DMD, died from lack of assistance in the community, of government neglect, not from muscular dystrophy. MDA doesn’t mention that; they focus on research. Many parents with children affected by MD work feverishly to fundraise for the MDA, thinking that when their children inevitably become badly disabled that money they helped raise will assist them in their hour of need. They’re being cruelly misled. MDA doesn’t do that; they focus on research.
Let’s look at some of the misleading claims from this year’s Telethon (from MDA.org):
Telethon claim: MDA provides flu shots to people with MD. “For only $30, you can provide a flu shot for Jerry’s Kids!”.
The truth: Just because national MDA authorizes local branches to cover flu shots, doesn’t mean all do. From what I’ve heard, one guy gets flu shots at an MDA clinic in California, but they aren’t available from Boston MDA. And I don’t know if the reborn Mobile, AL MDA does this, but I never saw the old Mobile MDA offer flu shots (prior to them getting shut down for fraud/embezzlement in 1993).
Telethon claim: MDA provides occupational therapy, physical therapy, and respiratory therapy consultations to people with MD.
The truth: I’m sure some clinics provide this, but I’ve never actually seen it or heard about people receiving this. And remember that if you don’t live near a clinic, you can’t access this, or any MDA services for that matter.
Telethon claim: Thanks to your generous donations all kids with MD can go to MDA summer camp, with no charge to the families!.
The truth: My mom was charged $500 per child. People aren’t barred from camp due to inability to pay, but many local branches directly contradict Telethon promises and bill parents.
Telethon claim: MDA provides wheelchairs for people with MD. On the Telethon, you see shiny new wheelchairs in a row, and all these happy people who got wheelchairs.
The truth: Even for young children they provide little of what is on the Telethon. They will pay up to $2000 toward the purchase of a wheelchair (only if Medicaid and/or private insurance won’t cover all of it) and these days $2k will cover about one tire on a powerchair. And even that small assistance is exceedingly difficult to get. So, needless to say, very few of us get wheelchairs from the MDA. In this annual report on the MDA web site, they brag about giving out the $2k equipment payment (for wheelchairs, crutches, braces, etc.) to 4,200 people in 2008. Think about that. Out of all the millions of MD patients in the U.S., only 4,200 got equipment help last year. There are probably 4000 people with muscular dystrophy in Alabama and Georgia alone who need chairs! The facts on the ground make MDA CEO Bob Ross’ claim that “millions depend on the MDA for their very survival” more than a bit dubious (Ross, who gets $500,000 a year salary from the MDA, “depends” on them way more than most MD patients!)
The truth is that most of MDA’s efforts aren’t immediately seen by its consumers, as their focus is research to find a cure, laboratory work that we may or may not benefit from decades down the line. The lion’s share of the roughly $1.5 billion the Telethon has raised since its inception has been put toward research, and they’ve become the largest non-governmental sponsor of muscular dystrophy research in the world.
Right now we are in a situation where the public thinks the MDA is covering much more than they actually are, and that can sometimes even complicate efforts to get public sector assistance. When I was in Montgomery arguing against Medicaid’s 21-cutoff, a state senator said, “doesn’t the MDA cover that?” He was baffled and incredulous when told no.
The MDA could change its misleading ways by a) changing their policies and widely providing the goods and services advertised on the Telethon. OR b) stop misleading the audience that they are providing goods and services to us. Just come out and say, “we mainly do research, here are some research projects we are doing.” They could interview researchers and do a lot with the truth. I think it’d be cool to learn about MDA-funded scientific breakthroughs and what they mean. Show us illustrations of how dystrophin works, a diagram of a mitochondrion! Be honest and you’ll go far.
I wouldn’t mind the Telethon as much if they practiced what they preach or preached what they actually practiced. I want the MDA to reform, but I’m not holding my breath.