Online Autism Fund: Godsend or Money Pit?

An online effort aims to help parents afford autism treatment, but will it work?


Aug. 18, 2008 — -- Late one night in June, after reading about the second mortgages, overtime hours and general financial hardships that families of autistic children face, a Virginia woman came up with a novel approach to help.

Tori Tuncan, a mother of two, created the blog site Lend4Health, based on the concept that if insurance companies won't pay for some treatments perhaps an online patient community could.

Families looking for help can send Tuncan pictures, bios, references and the name of the treatment they want. Then she, via her site, acts as an intermediary for donors who wish to give small amounts or micro-loans to the cause through PayPal.

In the six weeks since Lend4Health's launched, Tuncan has already collected and disbursed nearly $3,180 for four families. She has also gained a volunteer staffer and job inquiries from MBAs.

But what Lend4Health's site pays for, and how the site functions, could lead it down two paths: a model to help patients pay for cutting-edge medicine or a center point for a heated debate.

"That's not a model that I've heard before," said Katherine Boas, co-creator of Barefoot MBA, a basic business education for micro-loan recipients. "She's broadening the reach of the traditional community fundraiser to micro-lending. If successful, that could be a really cool model."

Yet Tuncan needs to iron out some details. As of now, she has a site disclaimer stating that she is not responsible for repaying any loans. However, she is technically managing the intermediary Lend4Health PayPal account by combining the numerous small donations into one large disbursement plan, and manually making the payment to the families' PayPal account.

So far, lenders and loan recipients are putting their faith in Tuncan -- and each other.

"I think it's an honor system. That's just how I'm looking at it," said Petra Smit, who gave a total of $200 to several families when she stumbled upon the Lend4Health blog. "If I get it back, I'll probably contribute to another loan. At some point, you just have to have a little faith."

Smit is the mother of a 10-year-old autistic boy who, she says, benefited greatly from diet changes based on diagnostics allergy tests that were not covered by her insurance.

"When I went to check it out, some of these stories of these kids, I recognized some of my own story, or my own son's story," Smit said. "It's just my way of paying it forward a little bit. I certainly had help along the way."

Tuncan knows she can't rely on such goodwill all the time.

"The big issue is that what if somebody doesn't pay you back," said Tuncan, who added that she e-mails the disclaimer to everyone who loans money. She might try to turn the Lend4Health blog into a nonprofit with more regulation and legal protection, she said.

In the meantime, Tuncan says she hopes lenders use common sense. "I suggest that people only loan an amount they can handle not getting paid back," she said.

"You have the option of just putting your 20 bucks back in your wallet or you can put it back to another family -- eventually it could turn into a pool of money to keep going," Tuncan said.

Why such a pool of money would be necessary may belie one of the sites other potential pitfalls, or breakthroughs. Many of the treatments that Tuncan hopes will be paid for with Lend4Health are controversial.

Both donors and recipients on Lend4Health's blog swear by the "bio-medial" autism treatments the site advocates, often provided by the Defeat Autism Now!, or DAN!, group.

Jeanne, who asked that not use her name to keep her as an anonymous donor on the site, has personal experience using the DAN! protocol with her 7-year-old son, who is autistic.

Jeanne said "he went from nonverbal, wearing diapers," at age 4, when he started the DAN! protocol, to speaking and attending school at his age-appropriate grade level.

"Obviously it's working or people wouldn't be doing it," Jeanne said.

But many health insurance companies aren't so enthusiastic. Elements of the DAN! protocol, such as blood allergy tests, endoscopies, diet counseling and a detoxification process called chelation, are covered by insurance companies for other conditions.

But without proof that the same treatments can help autism, the insurance companies won't pay.

"Insurance companies typically go by what is the accepted medical guideline," said Katherine Loveland, professor of psychiatry, behavioral sciences and pediatrics at the University of Texas Medical School in Houston. "[These treatments] may have some legitimate medical basis, but they haven't been shown to be effective and safe for this use."

She added, "Some of these treatments have potential risks, too," mentioning chelation as one such treatment.

But Loveland and her colleague Dr. Fernando Navarro, assistant professor of pediatric gastroenterology at the University of Texas in Houston, are attempting to do a clinical trial to test one of the most popular treatments on the DAN! protocol: restricting gluten, dairy or casein from a child's diet.

"We see at least one to three patients every week with autism," said Navarro, who will be studying gastrointestinal data gathered from the double-blind placebo trial of 40 children on different diets. Navarro has found that a disproportional number of children with autism show up with stomach issues.

"There are many families who tell you in great seriousness that when they have this child on this diet or that diet their child improves," Loveland said. "That's a very intriguing thing, and we don't know at this point to what [extent] it has to do with autism."

Loveland and Navarro hope to uncover whether diet changes have an effect on the so-called "leaky gut" problem attributed to many autistic children. Then, through behavioral interviews every two weeks, the researchers hope to see if the diet changes behavior.

Yet Loveland said she has seen even the most well-researched and gold standard care -- such as speech therapy or applied behavioral analysis -- go uncovered by insurance agencies.

"It's a confusing thing, partly because what the insurance companies will cover varies by state," she said, adding, "Now, we know that insurance companies can often be slow to change even when practice does change."

In the meantime, mothers such as Heather Martin might turn to something like Tuncan's blog. So far, $650 has been donated toward Martin's $3,700 request for hyperbaric chamber treatments for her 6-year-old autistic son, Brock.

"There won't be any money directly to me," said Martin, who agreed with Tuncan to send the money directly to the hyperbaric chamber rental agency. Martin wants to do a second round of hyperbaric chamber treatments soon. She says Brock went from being completely nonverbal to saying "I want fish" -- meaning fish crackers -- two weeks after a treatment.

"I know that I'm definitely going to be able to pay this back," Martin said. "Just on a day-to-day basis, I'll be able to save enough in six months."