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Whatley's frustrated widow carefully pulled the pristine 1964 Fender Stratocaster from under their bed and put it up for auction on eBay, pledging half the proceeds for Merkel cell carcinoma research and the rest to pay his medical bills. She knew scientists were having little luck finding money to study a killer so rare that few doctors recognize it, much less know how to treat it.
"It's one thing to give a donation. But I was thinking if I did it on eBay, so many people saw eBay, maybe it would make some people out there think about bumps that they had," and seek help sooner, says Dana Martin Whatley of Austin, Texas. (Yes, husband and wife shared the name Martin).
She wound up donating $15,000 last year to the University of Washington
-- not where her husband was treated, but where Merkel cell authority Dr. Paul Nghiem is struggling to collect samples of patients' tumors to unravel genes that fuel the cancer.
Merkel cell carcinoma provides a poignant glimpse of the desperate intersection of research dollars and the suffering wrought by rare diseases.
It's a cancer only recognized as distinct from melanoma -- even more aggressive, and needing different treatment
-- about 15 years ago. Diagnoses have tripled to about 1,500 a year.
Here's the rub: The first sign is a painless bump, often reddish to purple, that can resemble a benign cyst, confusing even dermatologists about whether a biopsy's needed. But Merkel cell carcinoma spreads rapidly once that bump appears. A third of patients die in three years, double melanoma's mortality.
Yet there have been no well-controlled studies of the best treatment. Intense radiation is key
-- unlike melanoma, Merkel cell carcinoma seems unusually radiation-sensitive, says Nghiem (pronounced Nee-ahm). There is no evidence that adding chemotherapy right away helps, and it may even worsen patients' chances, he adds.
Only last month was the first comprehensive report on symptoms and risk factors published. It almost exclusively hits Caucasians, over age 50, on sun-exposed skin. And while a weak immune system greatly increases risk, most patients, puzzlingly, have normal immunity.
Then in January, University of Pittsburgh scientists announced they'd discovered a previously unknown virus lurking inside Merkel cell tumors, a virus that just may be the cancer's trigger.
"If we'd had funding, we could have done this easily five years ago," says lead researcher Dr. Patrick Moore.
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Despite earlier success discovering another cancer virus, Moore
couldn't win government money for the Merkel cell research and spent
years cobbling together dollars to do it. The next step, also so far
unfunded, is to create a blood test for this "Merkel cell
polyomavirus," to see how common it is and why it only rarely harms.
Indeed, for two decades, Merkel cell research has depended on
small pilot grants and family fundraising like Whatley's, says
Nghiem. Last week, he won what is believed the disease's biggest
research grant to date, $840,000 from the American Cancer Society.
Rare diseases always struggle against more common killers for
funding.
"There's no money invested in finding a cure because there's no
profit margin, there's so few patients," says George Campbell of
Charleston, S.C., who founded a Google-based support group for
Merkel cell patients after his 2005 diagnosis.
But belt-tightening today cuts across all diseases. The National
Institutes of Health's budget has been essentially flat since 2003,
which a recent report found equal to a 13 percent drop if medical
inflation is counted.
One consequence: Last year, the number of clinical trials run by
NIH's premier cancer network dropped enough that 3,000 fewer
patients were enrolled, says Dr. Allen Lichter of the American
Society for Clinical Oncology.
Meanwhile, a small fraternity of Merkel cell patients has banded
together to push education, of doctors and the newly diagnosed -- both to help them navigate the frightening treatment maze, and to
urge them to donate tumor-tissue samples to Nghiem's lab.
"The time it takes, the research, there's just not an awareness
of this at all," says Keith Boyer, 72, of Burlington, Iowa, whose
Merkel cell hasn't returned since radiation two years ago.
___
On the Net:
University of Washington: http://www.merkelcell.org/
Patient support group:
http://groups.google.com/group/merkelcell/
[Associated
Press; By LAURAN NEERGAARD]
Lauran Neergaard covers health and medical issues
for The Associated Press in Washington.
Copyright 2008 The Associated
Press. All rights reserved. This material may not be published,
broadcast, rewritten or redistributed. |
