International MPN News, Science & Opinion

Letters – Spring 2016

mailbox

Stem cell transplant covered by Medicare… by luck

There is a lot of talk lately about choosing a supplemental that will cover SCTs for people who are going on Medicare. 

It is an EXTREMELY important topic since if they take straight Medicare they will not be able to have an SCT, as was the case for my friend Marlene. It is very confusing, and when we are below retirement age, as it was in my case (I was 47), the misinformation is formidable! I was so depressed and was desperately trying to find information nobody could give me, even lawyers that I called didn’t know. I was given erroneous information too, including from a Medical social worker. That’s how confusing it all is! It was through sheer determination and literally weeks of daily calls, all day long, that I finally found out what to do. 
 
It is very confusing and scary. I was lucky, very lucky. Marlene wasn’t so lucky.  You may remember my friend Marlene, a member of our local MPN group. She had post ET/MF, she was on Original Medicare with the best Medigap (supplemental), ​the “Cadillac Plan” as it is called. Because of it, she could not get an SCT, so she went the clinical trial route hoping for a cure, or at least a treatment that would keep her around until a cure comes along. Her spleen was enlarged and her blasts were climbing. One day she was in so much pain her family took her to the emergency room, she died a few hours later in the ICU, her MF had changed to AML and the doctors were not able to control it. 
That is so so wrong! She needed an SCT, and just because it was the “wrong” disease, she could not have it. She did not have to die, at least not without trying her chance with the SCT. And it makes me angry, very angry… 
Succinctly, what I found out is this: There are two kinds of supplementals:

 

— Medigap: A Medicare Supplement Insurance policy, sold by private companies, can help pay some of the health care costs that Original Medicare doesn’t cover, like copayments, coinsurance, and deductibles.
 So, if I understand correctly, Medicare pays for part of the cost and the Supplemental insurance pays for the rest. This is “Straight Medicare”, or “Original Medicare”, and they do not cover SCT for MF. 
 
– Medicare Advantage Plan:  A type of Medicare health plan offered by a private company that contracts with Medicare to provide you with all your Part A and Part B benefits. If you’re enrolled in a Medicare Advantage Plan, most Medicare services are covered through the plan and aren’t paid for under Original Medicare. Most Medicare Advantage Plan offer prescription drug coverage. 
 
So, with the Medicare Advantage Plan (MAP) you are covered under the insurance plan chosen, including SCT if they cover it. That is what I had chosen, totally by chance; I was very fortunate to find out my insurance covers SCTs.
  
   — Beatrice Larroque
divider horizon line
line
A fresh perspective on clinical trials

…I was participating in a Phase III trial for a drug that held promise for this cancer: pacritinib. I write “was participating” because the trial has been halted by the FDA, and I am no longer taking the drug. This has given me a fresh perspective on clinical trials.

I remember talking with one of the front desk staffers at the front desk of the transplant center; … he had checked me in for my appointment a few weeks before, and remembered me. He asked me how the trial was going, and I responded with “Fine.” He then said he had been on a trial for a medication, and how important the trials were, and how they had changed: patients were not treated like “experiments,” there was little risk, and the old-fashioned view of us being “guinea pigs” was just wrong.

I did not disagree with him at the time.

Then on Feb 9, the FDA halted the Persist II trial, with no warning. Apparently, there were a few “adverse mortality events” – somebody died.

Now, that sounds terrible – however, keep in mind that we’re talking about a drug trial involving high-risk patients who are terminal. Pretty much no matter what you do with that group, somebody is going to die. Consider that the deaths occurred in people who had been in the study for at least 6 months, and the first six months for anybody in this group meant NOT taking the drug: you essentially have taken a group of dying patients, given them quite possibly NO treatment for six months, and some of them died.

Really?

The answer, according to the FDA: immediately cease use of the drug. No matter if it was helping you; no matter how much benefit you were receiving.

Moreover, it is well known in the hematology – oncology community that stopping a drug in this class (JAK2 inhibitors) cold-turkey can result in terrible side effects, including death. Yet that is exactly what the FDA has us doing: stopping the drug cold turkey.

It hasn’t been easy: my pain levels have greatly increased; fevers are back; night sweats have returned; fatigue levels are greatly increased; I am unable to eat a full meal; my white blood cell counts are dropping rapidly.

It seems to me that patients should have been given an option to either stop the drug immediately, or to taper the dosage to avoid the flare-up of symptoms.

That the FDA chose to act with little regard to patient welfare in this matter shows, in fact, how patients in a clinical trial really are just guinea pigs.

Another view of this can be found at MPN Forum Magazine .

Update, 2/25/2016.

The pain continues; it has reached the point where I am taking NSAIDs to counteract some of it, even though I know I will be gut-bleeding from them. I would say that 80% of the time, I am unable to walk upright at a normal pace; the pain is just too much.

In the past 72 hours, I’ve started a new trick: severe chills and shakes. They come on randomly; sometimes I will have a fever, sometimes not. When the hit, my entire body goes into weird sort of spasm. As I convulse from my feet upward, the body not only tightens down, but also vibrates. It’s really difficult.

I’m fairly sure that I’m dealing with systemic inflammation and rebounding cytokine levels from the cold-turkey stop of the Pactritinib. Any fever that I have had has not gone above 101, and starts to come down fairly quickly.

I am supposed to visit the ER anytime I have a fever of 100.4 or above; since my immune system is not in great shape, my doctor has instituted a neutropenic protocol for me. My insurance doesn’t cover ER visits; between that fact, and the fact that I would have gone to the ER 8 times since Friday, I’ve just abandoned this protocol.

The fevers and shakes seem to be reasonably well-controlled with Tylenol.

– Bob Wanamaker

line

EMAILSend your letters to: ourMPNforum@gmail.com

 

Comments on: "Letters – Spring 2016" (1)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: