Wednesday, February 11, 2015

HSCT for MS -- Insurance Battles Continue

I can relate to this article. It's now one year after my HSCT treatment in Chicago. Blue Cross Blue Shield Minnesota refused to pay after four appeals, so I had to self pay in order to get treated at Northwestern, stop my MS and stop taking expensive MS drugs and plasmapheresis treatments that had horrible side effects and didn't work. In addition to giving me another shot at life and keeping me off disability, HSCT is saving BCBS approximately $150,000 a year.
My case against BCBS is now in the hands of a federal judge. It boggles my mind that they are fighting me on this. My lawyer, who is working on contingency, thinks we have a strong case. We'll see.

http://fox17online.com/2015/02/09/doctor-calls-life-changing-stem-cell-treatment-a-win-win-for-patients-and-insurance-companies/

Doctor calls life-changing stem cell treatment a ‘win-win’ for patients and insurance companies

CHICAGO, Ill.– A doctor who performs stem cell transplants for people with debilitating diseases calls the procedure a “win-win” for both the patient and their insurance provider.

For the past 30 years, Dr. Richard Burt with Northwestern Memorial Hospital in Chicago, has been researching stem cell transplants.
“We certainly are seeing results that nobody else has seen before,” Dr. Burt said. “We had people that have gone to major medical centers around the country and it’s just more of the same. They continued to decline and they come to us and get a transplant and they get off all therapy and they just get better and better.”
Cory Smallegan, from Grand Rapids, said he was one of Dr. Burt’s patients.  He says that he’s been given a second chance at life due to the transplant.
“A month or so later, I was running and climbing up stairs and doing all sorts of things I couldn’t do before,” Smallegan said.
Smallegan was diagnosed with chronic inflammatory demyelinating polyneuropathy in 2011.  It’s a rare neurological disorder that causes progressive weakness in the arms and legs. Prior to the transplant, he said he was making arrangement to live his life from a wheelchair.
“My legs just couldn’t lift up. Normal people can stand on their toes, I couldn’t do that,” Smallegan said. “I would fall…I would run into things.”
Lori Mills was also diagnosed with CIDP. She’s in the process of seeing Dr. Burt for treatment.
“I got to the point where I was paralyzed–couldn’t move at all,” she said.
In order to get the transplant, a patient first needs to have their diagnoses confirmed by Dr. Burt. He then gives them a one-time treatment that nearly wipes out their immune system. They’re then infused with their own stem cells, which rapidly regenerates a new immune system that functions how it’s suppose to.
“We’re able to reverse disability,” Dr. Burt said.
The only problem is, health insurance providers don’t always cover the procedure. While Blue Cross Blue Shield has agreed to cover Mills’ transplant, Smallegan is now more than $125,000 in debt because BCBS denied him coverage, stating the transplant was a “clinical trial.”
Without the treatment, Mills and Smallegan said they’d both be on IVIg treatments and steroids for the remainder of their lives. Not only do they say those treatments did little to make them better, they said it was expensive, costing BCBS nearly $40,000 a month.
Smallegan, who’s no longer on any treatments, said he’s saved BCBS big money.
“Blue Cross has now saved $1.2 million alone not paying for my treatments,” he said.
Dr. Burt told FOX 17 that getting insurance to cover the procedure is a process. That the medical effectiveness of the treatment has to be proved through published data, which he’s working on. In the meantime, he said stem cell transplants are helping countless patients with various diseases, such as, multiple sclerosis and crohn’s disease.
“I have no doubt that it’s a win-win. It’s a win for the insurance company because it saves money capered to continuing IVIg or plasma feresis,” Dr. Burt said. “It’s a win for the patient because they don’t have to have all these other therapies and they get better.”
FOX 17 reached out to Blue Cross Blue Shield to learn why some patients are covered when it comes to the procedure when other’s are not. They haven’t returned the calls and emails by Monday.
Mills is going through the process of having the stem cell transplant.
“I’ll get that shot again,” she said. “I’m just excited at the whole new shot at life.”

Friday, February 6, 2015

Hunt for an MS Cure? Newsweek Missed the HSCT News

Newsweek's February 4, 2015 article The Hunt for a Multiple Sclerosis Cure, is ambitious in scope and, for a popular audience, is deftly written. It's worth a read, with some insights about the human suffering caused by MS interspersed with a smattering of interesting research into possible future cures.

The problem with an article like this is that it's bound to miss a lot. And in this case, missing HSCT was a huge miss! I did HSCT at Northwestern University in Chicago one year ago. It stopped my very aggressive RRMS. I no longer need MS drugs. A recent JAMA paper by Dr. Richard Burt summarizes the success of the procedure so far with 151 patients. Most patients improved by at least one point on the disability scale and nearly 85% showed no evidence of further MS disease activity after two years. No other drug or procedure comes as close to being a cure!  See Dr. Burt's report here.
http://www.stemcell-immunotherapy.com/article_pdfs/jama-jan-20-2015-vol-212-number-3.pdf

ALERT: Northwestern is still recruiting patients for a Phase 3 study Stem Cell Therapy for Patients With Multiple Sclerosis Failing Alternate Approved Therapy - A Randomized Study
https://www.clinicaltrials.gov/ct2/show/NCT00273364?term=failing+beta+interferon&rank=2



Acorda's Remyelinating Antibody -- The MS Drug Trial I Missed

The holy grail for MS treatment is finding a drug that rebuilds the protective myelin sheath around nerves.

In 2012, I had been called to be a test subject in a Phase 1 safety and tolerability study for a remyelinating drug from Acorda that had shown promise in mice. My spinal cord had spots where my immune system had damaged the myelin. My wiring was literally shorting out, leg control was starting to fade, and I was more than ready to be one of the first humans tested on the drug.
But then a very severe MS attack hit me and I was disqualified from the study. I was devastated when Acorda proceeded without me.
But I was later fortunate to be accepted for Dr. Burt's different stem cell transplant (HSCT) study a few months later.
All's well that ends well. HSCT stopped my MS attacks, so my nerves can now slowly heal naturally. And nobody died in the Acorda study. It now appears that the Acorda drug is safe enough to move on to Phase 2. This is great news for future MS patients, and perhaps victims of spinal cord injury. But bear in mind that FDA studies take a long time. If the Acorda drug passes the next rounds of testing, it will still be at least a decade before it's approved for the marketplace.

The Phase I study results are still being tabulated. One February 6, 2015 the study is listed as active but not recruiting.  Stay tuned . Acorda could start recruiting for Phase 2 at any time.

https://www.clinicaltrials.gov/ct2/show/NCT01803867?term=acorda&rank=21

http://multiplesclerosisnewstoday.com/2015/02/06/acorda-announces-phase-1-results-for-remyelinating-antibody-in-multiple-sclerosis/