April 16, 2004, 10:49PM
Arthritis sufferers have no local link
Chapter's demise cuts vital resource
By ERIC BERGER
Copyright 2004 Houston Chronicle Medical Writer
ARTHRITIS FACTS |
| In the United States:
• 9,500 deaths
• 750,000 hospitalizations
• 8 million people with limitations
• 36 million ambulatory care visits
• 49 million people with self-reported,
doctor-diagnosed arthritis
• $51 billion in medical costs and $86 billion in
total costs
In Texas
• Adults with arthritis or chronic joint
symptoms: 4,571,000
• Percent of adults with arthritis or chronic joint
symptoms: 29.94 percent
• Total costs: $7 billion
Source: U.S. Centers for Disease Control and
Prevention |
Calista Stewart, a tai chi teacher from Lake Jackson, believes
so highly in the slow and graceful Chinese exercise's ability to
ease aches and pains, she decided to teach it to arthritis
sufferers.
But when she tried to contact the Houston chapter of the
National Arthritis Foundation about promoting such a class,
Stewart found, to her surprise, the chapter no longer existed.
The office, it turns out, closed Jan. 1, leaving arthritis
sufferers living in the southern half of Texas without a conduit
to medical information, support groups and physician referrals.
"This is the fourth-largest city in the country," Stewart
said. "And what is out there now for these people? There's a big
gaping hole here. What happened?"
What happened is that the local office went broke. Houston
volunteers could not raise enough capital from fund-raising
efforts to pay half a dozen staff members and operate an office.
Plus, they owed more than half a million dollars to the national
office.
So, very quietly, board members decided late last year to
shutter the local office, which also served San Antonio and
Austin.
"The economic downturn hurt us, Enron hurt us, and Sept. 11
hurt us," said Denise Oncken, former chair of the Arthritis
Foundation South Texas Chapter. "Arthritis also is not a
glamorous disease. It's not like heart disease or AIDS.
Generally, people don't die directly from it, and it's more of a
quality-of-life issue."
Yet arthritis is one of the most prevalent diseases in
Houston, afflicting up to one-third of the population, according
to health officials. The disease comes in many forms and can
afflict all ages, from osteoarthritis, gout and lupus in adults,
to juvenile rheumatoid arthritis in children.
Some aquatic and other exercise programs remain for arthritis
patients, but without a paid person to coordinate them, the
classes may eventually end. A lack of staff also means no one is
working to address local needs or create and support new
programs, such as the one suggested by Stewart, Oncken said. And
the national office won't be able to adequately refer patients
to local specialists, she said.
In effect, former board members said, people who develop
arthritis and seek more information about Houston's resources
are left without a safety net.
The closure of the Houston office leaves two main offices in
Texas, both in Dallas -- the North Texas and North West Texas
offices -- as well as a branch in Waco.
The Houston office's financial troubles began several years
ago when cash-strapped offices in San Antonio, Austin and the
Rio Grande Valley were folded into the then-Gulf Coast Regional
office, bringing with them about $500,000 in debt.
In recent years, that debt has grown, Oncken said, and the
Houston office has been unable to balance its budget. Annual
fund-raisers, such as a "A Joint Walk" in May, and wine and food
tastings failed to attract enough capital. Now, the money raised
through mailings in the South Texas region will go to pay the
debt.
In the end, said treasurer Robert Boblitt, the South Texas
office was funded largely by contributions from the corporations
of board members. Boblitt is chief operating officer of Silver
Eagle Distributors, the local distributor of Anheuser-Busch
beer.
With no endowment and no predictable revenues, it will likely
take a large bequest or other windfall to reopen the local
arthritis office, he said.
The closure was "absolutely" distressing, said Dennis Bowman,
a senior vice president of communication for the national
foundation. At least three other chapters of the foundation,
which has about 50 affiliates, closed last year because of
financial strains.
"The Houston chapter has been doing a great job of providing
services, but for whatever reason, their fund raising can't keep
up with overhead costs," he said.
The national foundation is studying the situation, but for
now, Bowman said, the financial situation dictates having no
local presence.
One area the closure won't affect, he said, is research
funding. Annually, the foundation gives about $30 million to
hundreds of scientists studying cures, Bowman said.
Arthritis Tips:
Joint hurting Veggies:
Try to avoid vegetables that contain
solanine. It is a compound that can worsen joint pain.
Potatoes
Tomatoes
Eggplant
Sweet peppers
Hot Peppers
Arthritis drug might increase cancer risk.
Study finds rise in lymphoma cases for Remicade users. Patients
taking Remicade for rheumatoid arthritis suffered a type of cancer,
lymphoma, at three times the rate of the general public, manufacturer
Centocor warned doctors. Centocor, a subsidiary of Johnson &
Johnson, said the lymphoma incidence rate was six times higher among all
patients who took the monoclonal antibody in clinical trials. The Malvern,
Pa. based company, working with the federal drug regulatory agency,
revised its label to reflect the lymphoma risk. According to NDCHealth,
Remicade was 28th among top selling drug in 2003, with $1.5 billion in
U.S. sales. The label change is the drug's second in six weeks. In
late August, Centocor warned that people taking Remicade for rheumatoid
arthritis and Crohn's disease can sometimes experience fatal blood and
central nervous system disorders. At least 12 people taking Remicade in
combination with other drugs died worldwide. The Food and Drug
Administrations said at that time that those deaths could not be linked
definitively to Remicade use. The company's new warning letter to doctors
said patients receiving Remicade suffered higher rates of lymphoma than
seen in the general population.
This article was posted in the Houston Chronicle on 10-8-2004.
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