Beyond twists of fate and bureaucratic blunders, leukemia victim’s spirit shines on with gift for others in similar need

Some current headlines reinforce the need for legal counsel and improved legislation for those needing help with disabilities–and against those who game the system. In this three-part installment, the first case we’ll look at is reminiscent of that of Heather Russell, which we covered here, a glaring example of the glacial response of the bureaucracy and the unnecessary pain it inflicts on patients when they most need help.

From one extreme to another

Diana Smith’s case adds a twist, in that one agency’s apparent quest to be helpful apparently negated another agency’s ability to help the victim of a rare leukemia.  However, well before those agencies got involved, she already was riding out a whipsaw of events.

The Sunrise, Florida woman, survived by three-year-old son, Cameron,  was pregnant with another child when she was diagnosed in July 2009. Her doctors advised terminating the pregnancy because of the chemo she would need to battle the leukemia. Cameron’s father–Smith’s fiance, Eddie Velez–stepped up ready to sell a valuable comic-book collection to go toward treatment costs, reports an Aug. 16 article in the South Florida Sun Sentinel.

Theft

In August, the comic books were stolen from Velez’s home in Ohio. In March, Smith told the paper that the thief had yet to be apprehended.

Told she needed a bone marrow transplant, according to an Aug. 20 account of a CBS affiliate, Smith was able to raise more than $100,000 with community help and maybe a Facebook campaign (we couldn’t find the Facebook page),  to get in line for the operation. Former Miami Dolphins player Kim Bokamper and other celebrities also participated.

Son gets benefits

Also in March, in what must have seemed like a stroke of good luck, “Smith was contacted by the Social Security Administration and was informed that her three year-old son was entitled to receive Social Security disability payments. Even though she didn’t ask for it, she signed the form and received her son’s first check.”

Medicaid withdrawn

But the luck didn’t hold–even though the SSA seemed to be trying to help, the new benefits put her at odds with Medicaid: “In April, Medicaid canceled her universal health care policy because her income level had risen with her son’s payments – making her ineligible for the insurance program.”

Well, at this point, we all see this coming–given the Medicaid withdrawal, the hospital also stood down:

“Jackson Memorial Hospital then informed Smith that they couldn’t go forward with the transplant because the risk was too high. The universal policy from Medicaid would help shield the hospital from liability in this kind of case; without it they are subject to liability issues.

“Even though Smith offered to cancel her son’s disability benefits, she was told it’s too late.”

Legislators intercede

To break the inter-agency logjam, U.S. Rep. Alcee Hastings, D- Miramar, and state Sen. Dave Aronberg, D- Greenacres, had to intervene, and somehow they got the Medicaid coverage reinstated. So the bone marrow transplant was performed in May, and Smith was able to visit her son at home on Mother’s Day. “She was ordered to spend forty five days in the hospital followed by three months of bed rest,” says the CBS affiliate.

She died in August–perhaps a victim of the delayed medical procedure. Most likely, we’ll never know.

Leftover funds

But the story doesn’t end there.

In the end, she added her own loving spin to the harsh twists she had faced. As it turns it, the fundraiser brought in about $90,000 more than what her procedure cost. She had it set up such that nobody “involved in Smith’s fundraising effort has access to the unused donations, according to Jason Hare, patient program coordinator for the Bone Marrow Foundation,” says the Sun Sentinel.

“The leftover money, held by the New York-based Bone Marrow Foundation, will go toward fulfilling Smith’s wish: to help another Broward County resident whose life may depend on a similar operation.

” ‘I know it was really hard for me to collect the money, so I want to help someone else,’ Smith told the Sun Sentinel in March. ‘If it wasn’t for my friends and people donating, I wouldn’t have been able to do it.’ ”

[Next: Part Two discusses revelations that a suspected serial killer has been receiving disability payments from the city of Los Angeles for 19 years. Read it here.]

Tags: bone marrow transplant, Diana Smith, fundraiser, Medicaid, Rare leukemia, Social Security

This entry was posted on Tuesday, August 24th, 2010 at 11:17 am and is filed under disability. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.