Medicare Coverage Potholes: Do You Suffer From Chronic Hives? Do You Use Xolair?

This is a story that covers a few medical issues: first and foremost the drug Xolair as prescribed for chronic hives (Urticaria), and second getting the drug approved as an off-label prescription drug under Medicare’s Part D Drug Benefit. Your awareness can be the difference between living well with chronic hives, or existing in an ongoing miserable and unhealthy state. There are Medicare potholes with other drugs as well, and you will be shocked to know what makes the difference between an approved drug and a very effective drug that is not approved.

Many of you know Barb Sowell at FaultlineUSA. She was the first blogger I “met” when I started Maggie’s Notebook, and she is still my mentor. I will never be able to repay her kindness and patience, as I was in every way a “newbie.”

Barb’s husband Charles has had some unfortunate health problems for a few years now, that seem to add complication on top of complication. He is 65 years old and mid 2010 had very serious back surgery. Since 1990 he has been a cancer survivor. Twenty-one-years-out from any cancer diagnosis is a true cause for celebration, but the disease and/or treatment left him with a very harsh, ongoing bout with hives. While this story is not solely about hives and Xolair, you need to know about Charles’ experience, and especially if you are prescribed the drug Xolair

Hives can be a fairly benign but an uncomfortable occurrence, usually vanishing quickly, but sometimes they come, and they come in the most inconvenient places, and they tend to outstay your hospitality – and when they do, they can ruin your life.

Long before Charles reached age 65, and insured under his own insurance plan, he was successfully treated with the drug Xolair. Enter Medicare, and Xolair is no longer allowed.

Here are surprising details from the Chicago Tribune:

The Chico, Texasresident has suffered from hives since a 1990 bout with cancer and an autoimmune disease. In 2005, his doctor prescribed a medication typically used to treat asthma, Xolair, for the hives. It worked, keeping him virtually symptom-free.

But early this year he had to quit receiving Xolair injections because Medicare hadn’t approved them for that purpose. Without coverage, the medication costs about $1,600 and needs to be repeated every four weeks, Sowell said. That’s nearly $21,000 a year.

“That’s a big expense that wasn’t in our overall financial plan” for retirement, Sowell said.

While appealing his case to Medicare for coverage of the drug, he has been substituting another drug that has made him gain 20 pounds and leaves him breathless after even mild exertion.

“It’s maddening to know there’s something that can take care of me, but I can’t use it,” he said.

Baker and other senior advocates say they are heartened by a recent favorable decision in a New York federal court and the reintroduction of legislation calling for wider acceptance of off-label prescription drugs for patients under Medicare’s Part D drug benefit.

In an email, Barb Sowell tells me that her husband won “an important victory over Medicare a few weeks ago, but Medicare is now appealing the decision,” and she believes Medicare will win in the end.

So readers, the point here is, talk to your doctor about your medications and the possibility that something you desperately need may be denied because it is ‘intended’ for another use. As with Mr. Sowell’s case, the unavailability of a medication that makes your life liveable, is a huge loss.

I want to make the point again, that if you have also lost the use of Xolair for hives and you are on Medicare, or will be sooner than later, you may want to pay attention to the work Charles Sowell is doing to try to reverse the decision and get Xolair on Medicare’s approved benefit list. If you have information and want to contact the Sowells, visit FaultlineUSA and leave a comment on any article there.

 

 

 

  • Excellent article! I am Charles Sowell’s step-son and I remember the 15 years he suffered from hives with no effective treatment. It was awful because you never knew when or where they would strike. I couldn’t believe it when his doctor finally found a treatment that worked. It’s really sad that Medicare and other insurance companies are allowed to play doctor and overide a real doctors decision.

  • Maggie, thank you so much for writing a fine article highlighting the plight of my husband and of anyone who desperately needs an off-label prescription drug while on Medicare Part D.