Problems Hamper Sickle Cell Treatment
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WASHINGTON (AP)—The news is grim: Ten years after government approval of the first sickle cell treatment, only a tiny fraction of patients use the drug—despite new research showing the disease is far more painful than doctors ever suspected.
Ignorance on the part of both physicians and patients is to blame for underuse of hydroxyurea, concludes an expert panel convened by the National Institutes of Health.
Worse, there’s no other treatment in the pipeline for a disease that afflicts up to 100,000 Americans, most of them black—not only shortening their lives but causing regular pain attacks so severe that they frequently require long hospitalizations.
{snip}
“It’s sort of amazing how ignored this disease is,” says Dr. Sophie Lanzkron of Johns Hopkins University in Baltimore, which this month opened a special clinic to handle those pain crises that already has begun reducing ER visits.
“The whole idea that the first genetic disease described to man has just one FDA-approved medication, it’s just amazing.”
{snip}
Doctors have long measured sickle cell’s severity by how often patients seek care for pain crises. But last month, Virginia Commonwealth University researchers reported stunning evidence that that practice downplays the disease: Patients recorded their pain levels daily—showing more than a quarter were in pain on 95 out of every 100 days. Yet most toughed out even severe, crisis-like pain at home, reserving doctor and hospital visits for just the most intense episodes.
Now contrast that suffering with the NIH panel’s findings: Roughly half of adolescent and adult sickle cell patients are candidates for hydroxyurea, an old and inexpensive anti-cancer pill—costing less than $100 a month—proven to dramatically reduce sickle cell pain crises, hospitalizations and some organ damage. It may even prolong survival. Yet few use it, possibly as few as 5 percent of those who qualify.
Why? There aren’t better treatments. The main alternatives are regular blood transfusions, and intravenous narcotic painkillers plus fluids to ease pain crises.
Instead, the panel found:
* Few patients are treated by specialists in sickle cell while concerns about hydroxyurea’s side effects have been overblown—both among patients and among general physicians who either don’t know about or don’t heed national prescribing guidelines, says Dr. Otis Brawley, an Emory University hematologist who led the panel.
The drug can cause temporary drops in some types of blood cells, making patients vulnerable to infection or bleeding. So doctors carefully monitor patients beginning treatment, lowering the dose if needed. Also, a theoretical risk of birth defects requires contraceptive use.
But other fears—that it can cause cancer, or slow children’s growth—have proved unfounded, stresses Brawley.
* The drug is formally approved just for adolescents and adults, while sickle cell can be particularly hard on children. Small pediatric studies suggests it works in youngsters, too, but a larger study nicknamed Baby HUG is now under way to prove that in children under 2.
* It can take up to six months for hydroxyurea to improve health, and some patients give up too soon.
* And too often, teenagers who did well with the drug fall out of treatment as adults, when they lose insurance and access to pediatric sickle cell clinics.
{snip}
(Posted on March 4, 2008)
Comments
Another explanation:
* Blacks are less likely to stick to drug regimens that require consistent and faithful self-administration over long periods of time.
Posted by St. Louis CofCC Blogmeister at 7:12 PM on March 4
Sickle cell anemia is primarily a disease of Africans. Africa is incredibly rich in natural and human resources. Africa contains about 40 countries and 1 billion people. Why aren’t they doing anything about SCA? There should be a hundred African institutes and 100,000 African scientists working on this disease, which is so devastating to Africans. I urge Africans to use their incredible wealth gained from gold, diamonds, oil, tin, timber, uranium, platinum, tourism, and agricultural production to solve this problem.
Posted by at 7:37 PM on March 4
The thing is, if they don’t care, we don’t care.
Posted by at 7:41 PM on March 4
I don’t care about sickle cell animia….it they don’t care…why should I?????
Posted by lydia at 8:30 PM on March 4
Whatever happened to personal responsibiity? Self-discipline?
Posted by at 8:41 PM on March 4
it is very appropriate that ” sickle cell anemia ” is a black genetic disease because their favorite political symbol has been the ” hammer and sickle ” of Marxist communism. Parasitism is their biological niche.
Posted by Michigan patriot at 10:03 PM on March 4
it is very appropriate that ” sickle cell anemia ” is a black genetic disease because their favorite political symbol has been the ” hammer and sickle ” of Marxist communism. Parasitism is their biological niche.
Posted by Michigan patriot at 10:03 PM on March 4
You’re right; that does explain a lot. Communism really is in their blood!
Posted by Jill at 12:53 AM on March 5
I don’t like to see children suffer period. And, yes, this does include black and brown and yellow. Adults are a different story. Although I wish no one harm to anyone, my concerns are strictly aligned with White ailments.
Has anyone noticed how many blacks are in commercials these days? For 13% of the population, we are saturated with black faces in all forms of media. I guess this is a way for the elites to numb us to the idea of a Black president. Another subliminal message. Hey, it appears to be working…
Posted by GetBackJack at 12:59 AM on March 5
Naturally this is the doing of White Devils: if Whites hadn’t developed quaranteens and cures for malaria, more Blacks would have gotten malaria and been made resistant to SCA.
Posted by Jacqui in AZ at 1:47 AM on March 5
I read somewhere a long time ago that Hydergine was also of help in SCD. Also perhaps doses of folic acid. I believe that some French doctors were trying these treatments, and perhaps others. American doctors seem not to have heard of this stuff, though—at least, judging by the medical reports I’ve typed up.
Posted by at 3:39 AM on March 5
They need to make the treatments known in HIP HOP MODE since this is what so many blacks speak.
I gots da cell, I gots da cell, it nasty and it hurts like hell, I needs the drugs dat sets me free, I needs the treatment speedily. Now I knows I can gets well cause I gots da treatment and it sure works swell.
Posted by Tippy at 10:09 AM on March 5
Perhaps male SCA victims can cure themselves if this disease by raping young girls. Note how well that’s worked for AIDS in Africa.
Posted by Strider at 1:38 PM on March 5
Sickle-cell anemia can not be actually cured, because it is a genetic disorder that resulted from an adaption to the presence of malaria in sub-Saharan Africa. One gene for sickle cell makes that person immune to malaria. No genes for it means that person will get malaria and in primitive conditions eventually die of it. Two genes mean that person will suffer from sickle cell and in primitive conditions probably die. Sickle cell, then, is a biological adaptation that allows half of a population to survive in an area rife with malaria.
If black African despots weren’t squirreling huge amounts of money in Swiss banks, there might be more money to study this problem.
Posted by Michael C. Scott at 3:46 PM on March 5
Oops, I switched it around; SCA helps create a malaria immunitity, not the other way around.
Posted by Jacqui in AZ at 1:00 PM on March 6