Sunday, September 8, 2013

Sunday Globe Special: Compounding Conundrum

Related: Sunday Globe Special: Quorum Conundrum

"Pain, questions linger, a year after meningitis outbreak; 19 more have died since January" by Kay Lazar |  Globe Staff,  September 08, 2013

Across the United States, people like Devena Moore are grappling with a cascade of baffling and often debilitating illnesses, the legacy of tainted pain injections made at a Framingham specialty pharmacy. Long after New England Compounding Center shut down last October and headlines faded, many of the patients report they are still suffering unexplained blistering and rashes, blurred vision, headaches, trouble thinking, and strokes. They wonder when — or if — they will ever feel better.

Nearly 14,000 people in 20 states received the bad shots last summer and early fall, and federal regulators say 750 came down with fungal meningitis and other infections. Sixty-four of the patients have died — 19 since January — though it’s not known how many of the deaths were directly attributable to the fungal infections.

Some physicians are treating patients who weren’t diagnosed with fungal infections until five, six — even eight — months after they received the tainted steroids. The US Centers for Disease Control and Prevention is trying to sort out whether the infections in these cases took months to incubate, or whether the patients were unable to get a proper diagnosis before then.

The lingering illnesses come against a backdrop of partisan battles in Congress that have blocked passage of legislation to tighten federal oversight of speciality pharmacies like New England Compounding, leaving patients vulnerable to more outbreaks tied to contaminated drugs from such pharmacies, which mix their own medications and are mostly regulated by states.

You $ee the power of the pharmaceuticals? 

In August, the Food and Drug Administration announced a nationwide recall of products from a Texas specialty pharmacy, similar to New England Compounding, because of bacterial bloodstream infections in 17 patients linked to one of the company’s products.

 So nothing has really changed, huh? Americans food and drug supply is no longer safe.

Patient advocates say they are frustrated the CDC has not taken more of a leadership role and sent out disease trackers to investigate the ongoing misery.

That sentence there tells you all you need to know regarding who government $erves. 

Enjoy your Obamacare, folks.

The agency is instead relying on case reports forwarded to it from often-overwhelmed state health departments, and calls from individual physicians.

Meanwhile, Obomber is doing a full-court press to get a war going with Syria.

“We don’t have a coordinated response across the health system to track these folks and to collect information periodically that describes what’s happening,” said Terri Lewis, a rehabilitation specialist at Southern Illinois University Carbondale who administers a Facebook page for patients affected by the outbreak.

Maybe you should give the NSA a call.

Much remains unknown about the fungal infections. Caused by a black mold known as Exserohilum, they are so rare that specialists do not know how long the fungus, which can evade screening tests, can lurk in patients’ bodies. They can’t say whether the continued problems patients are reporting are smoldering infections, lingering side effects from the toxic antifungal treatments many took for months, residual tissue and nerve damage from their initial infections, or not related to the infections at all. 

Then WhyTF am I reading this?

The chief fungal disease authority at the CDC, Dr. Benjamin Park, said his agency is also frustrated with the many unknowns, but is doing its best with limited money.

There is always enough money for wars or cruise missile launches at $1.5 million a throw (plus replacement costs).

Last month, the CDC said it would fund a two-year study by researchers from the University of Alabama School of Medicine to track 500 patients from the states hardest hit in the outbreak — Indiana, Michigan, Tennessee, and Virginia.

“There are all kinds of anxieties about this infection. Unfortunately, I don’t think there are a lot of answers,” Park said.

“We do hear about patients doing quite well, who are off treatment and have fully recovered, leading completely normal lives, and others who don’t do well and are needing to go back on therapy,” he said....

You can go read about one.

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Related:

"Study will track long-term effects of meningitis outbreak" by Kay Lazar |  Globe Staff, August 24, 2013

Federal regulators have launched a study of the long-term health effects of a lethal fungal meningitis outbreak last fall linked to tainted steroids from a Framingham pharmacy.

The federal Centers for Disease Control and Prevention said Friday that it would fund a $216,000 study led by Dr. Peter Pappas, an infectious disease specialist at the University of Alabama School of Medicine, who leads a nationwide consortium of scientists who specialize in fungal infections.

Pappas’s team will track 500 patients from the states hardest hit in the outbreak — Indiana, Michigan, Tennessee, and Virginia — said Dr. Mary Brandt, who leads the CDC’s fungal diseases branch.

Overall, the CDC says medications from the New England Compounding Center of Framingham are believed to have sickened 749 people, including 63 who have since died.

That means another soul was lost in the interim two weeks.

A black mold found in the steroids caused a rare form of meningitis in hundreds of the patients, while many others have grappled with painful joint infections and other lingering symptoms. These infections are so unusual and the fungus so hard to detect with current screening methods that regulators, physicians, and scientists have been stymied in devising ways to diagnose and treat many of the patients.

The first phase of the study will last two years....

During which HOW MANY MORE PEOPLE will SUFFER or DIE -- as this state is all bunged up about medical marijuana!?

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My conundrum is what to do next since I have limited time before I have to go socialize and watch dreaded football. I think I'll spoil the party and bring up Syria. 

Or maybe I will just stay here and blog.