Improving End-of-Life Care With MS

Discussions about end-of-life issues are often taboo in our culture — until we are "suddenly" faced with unpleasant realities and challenging decisions. Although many deaths occur unexpectedly, a large number of deaths follow a prolonged period of decline in health due to a progressive disease. This path of decline has been termed "progressive dwindling."

Four broad trajectories of dying in an aging population were identified in a study of Medicare beneficiaries:

• Twenty percent of deaths followed illnesses, such as cancer, characterized by a clear clinical transition from treatable to untreatable progression.
• Twenty percent of deaths were related to progressive long-term conditions, such as COPD, complicated by acute attacks that increase the likelihood of death.
• Twenty percent of deaths were classified as sudden deaths, such as those following a fatal heart attack or accident.
• Forty percent of deaths followed a prolonged period of progressive dwindling associated with conditions such as Alzheimer’s disease or other degenerative conditions.

Read this post in its entirety:
Living with Advanced MS: Improving End-of-Life Care

MS Awareness: Dying from Complications

With the news this week that Annette Funicello, actress and singer, died from complications of MS, awareness of multiple sclerosis is reaching more people throughout the country.  Annette is well known and loved for her appearances as an original “Mousketeer” on the Disney’s original Mickey Mouse Club and in the popular teen beach party movies of the 1960’s.

Annette Funicello was diagnosed with MS in 1987 and shared her story in the autobiography, A Dream is a Wish Your Heart Makes: My Story published in 1995.  Annette spoke to NPR’s Fresh Air in 1994 about Mickey Mouse ears and why she went public with her multiple sclerosis diagnosis.  You can read the transcript on their website.

Read this post in its entirety:
Question of the Week: Dying From Complications of MS

Carnival of MS Bloggers #42

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Weight, Death, and SSDI

MS and Fat by Christina, submitted by Barbara

When Marianne asked me if I would like to write a piece for The Rotund, I started to freak out. Of course I am honored to have the invitation, but I haven’t written about being fat in a while and wasn’t sure I had something coherent and concise to say. But the truth is, I live as a capital-F Fat woman everyday and in every single aspect of my life there is conflict with that, including my Multiple Sclerosis (MS).

Diagnosing MS can be very difficult due to the wide range of non-specific symptoms. Most people with MS report having symptoms for years before getting a real diagnosis. For me, it has been at least 6 years since I first showed signs, yet I have only been diagnosed for 4 months.

One of the major hurdles for me being diagnosed is because I am Fat. No, the hurdle is not my beautiful 300-lb body. The hurdle is the intense, institutionalized fat-hatred common in the American medical establishment. Thanks to the “obesity-epidemic” whenever I visited a doctor, the cure to all my worries was weight-loss. Whether it was burning pain in my legs, numb fingers, exceptional fatigue, and even blindness in my left eye, according to the doctors, all I needed to do was drop a few (or 50) pounds and it would all go away.

I actually did it, too. I figured, it couldn’t hurt. But it did. I was so focused on getting rid of my symptoms through weight-loss that I ended up doing real damage to my body and mental health. And surprise, surprise, even after significant weight-loss, my symptoms were just as bad, if not worse. You wanna know why? Because MS has nothing to do with weight.

After getting my diagnosis, I shared all these stories with my neurologist and he was shocked. He couldn’t believe that other professionals had completely ignored my classic symptoms and recommended completely unrelated treatment. “It’s like treating a broken leg with rash cream,” he said. He really has no idea how true and common that statement is for fat people around the world. Even when a person doesn’t have all the “obesity-related illnesses” some doctors can’t see past the fat.

Unfortunately, even with the diagnosis my fat becomes a topic of conversation. Just recently I had two occasions of “OMG you’re fat you need to lose weight!” My favorite response is to chuckle and say, “No thank you, I like being fat.” And once I toss a little HAES their way, they get over the hoopla, start to listen, and treat my symptoms, not my appearance. Because the truth is, weight has nothing to do with MS. My symptoms and the treatment dosages would be the same whether I’m 300 pounds or 103 pounds.

So, it would be nice not to be told to lose weight all the time. I’m over being judged by the way I look and am ready for medical professionals to accept every part of me, listen to the words I say, and provide me with appropriate treatment options. Because I deserve it.

Summer Darkness

Better Forget
by Mary E. Gerdt
all rights reserved

Hot and sticky.
The weather had finally changed from the bitter cold to now the unbearable heat.
How are we to continue to tolerate this misery?
My sweat stung my eyes as I looked to the far horizon. I shook my head to refocus.
No sign.
I look in the opposite direction.
Nothing.
Don’t think about thirst. Those thoughts would not leave me alone.

Pain.
Sometimes sharp. Sometimes dull.
Sometimes pleasurable in a sick sort of way.
Pain better than thirst.

Voices.
Were they real?
Are they friendly?
They are too far away to tell.
My voice will not respond.
I am so parched.
A little squeak.
Smaller than a mouse cry.
Smaller than a mosquito buzz.
Surely they cannot hear me.

Lights.
Are they real? Is that the sun? Or some delusions.
They hurt my eyes but I want to stare at them.
They have rings around them. Halos.
Am I dead yet?

Dizzy.
How can I be dizzy lying down?
I feel I am floating but this hard ground reminds me I am on the desert floor.
A sore nags at my back side. Pain again. Stinging.

Rushing
I feel I am rushing here and there. Flying in a way.
No pain for a minute.
Flashes and needles and little noises.
Beeping noises like a smoke alarm.
Loud then soft.
Soft then loud.

Sleeping.
How could I sleep when I am dying?
Wasting living time.
Why not when it hurts so much to be awake?

Movement.
I can’t move.
Something must be broken.
Pains here, then there, then gone again.
If I could raise an arm I could call the voices over to help.

Crying.
I feel tears drop like rain. Little sad voices overhead. Is that an angel?
Pain then none.
Sleep.
Let me go.

Remember.
Remember when I was alive and well and fighting the battles of life.
Remember when I smiled and laughed and cried and wondered.
When we loved and were loved and lost and gained.
And

Forget
Those days in ICU when my parched bloated body looked horrible.
When you saw my pain in grimaces and questioning looks.
“Why me?”
When you wondered if I had pain, was dizzy, could I cry?
Yes, but forget those days.
Better you forget.

notes: This poem refers to my projection of what an ICU patient experiences after 8+ years as an ICU nurse observing all forms of illness, delirium, end of life. There has been much MS Blogger activity discussing end of life issues. This poem is one of my imaginary ends. Not good nor bad, I guess it is some of both. mary

A Flawed System 
by Jaime

This system we have is flawed! It is not right! I understand that there are a lot of sick people in this world and the government can't afford to pay for each one of them, but there has to be a better way. We would not be on SSDI if we did not have a medical reason to do so, so why is medical not provided right away? A 2 year waiting period is not acceptable! I would not care that I have to pay a deductible, but when your income is cut in 1/2 or more because you become disabled and have to go on to SSDI to begin with and then they want you to pay another 1/3 of that just to obtain medical...that does not leave you enough to support your family. That is poverty! We deserve better than that! That is not why we worked so hard and paid in taxes, so that when we became disabled or if something happened to us we could be at poverty level. That is just NOT okay!

It seems to me that the system needs to be changed. I just don't know where to begin in starting something like that. It is not right that there are hundreds, maybe thousands of capable people out there living off of our welfare system because they don't have the qualifications to obtain a job, or because they are lazy. I am not saying every person on welfare should be thrown off...I know that some states have systems in place (Utah did it for my sister when she applied for her disability) that you go on welfare while your application is in, but once you are approved they take your lump sum to pay back what you got for welfare, so at least this gets paid back. I am sure there are other reasons someone would be on welfare that may be justified, I just don't know. I just have a problem with the number of people who are perfectly healthy and capable of getting a job and don't, but soak up the resources that prevent people who actually need them from getting them. This just pisses me off!

Like I said though the system is flawed! It does not seem to me that it is right that someone who lives in NYC on SSDI and is single gets the same amount as someone in S. Dakota who is also single. Obviously the cost of living in NYC is much more expensive and so for the system to be fair things like cost of living should be taken into consideration....they aren't! This goes the same for SSI (although it does not matter if you are single or not because there is just a flat rate for SSI. It doesn't matter how many people are in your family). For SSDI you can claim your spouse and/or children also up to a specified amount, so there is a little more you can get if you have a child or if you are married, but it still is not much and they do not take into consideration anything like cost of living. Also, if you are awarded SSDI you do not qualify for medical coverage for 2 years and then you only qualify for Medicare, which is not the greatest coverage (but, it's better than nothing). SSI people automatically get Medicaid coverage which covers them at 100% (depending on the state they may have a small copay). This piece of the system I have a hard time with also. I think it is great that these people who are on SSI have Medicaid coverage. They did not ask to be disabled and it is not their fault they were unable to work and pay in taxes, however, for those of us who did work and pay in taxes, we should be eligible for medical also and immediately. There should be one system. The system I think should be evaluated based on a number of issues. They should take into consideration the illness, type of disability, need, cost of living in the area, income, family composition, if any health care is available (some people may have coverage available through a spouse but refuse it because they have Medicaid/Medicare through SSI/SSDI), etc. In order for the system to work properly it has to be based on each individual situation. You can't take a group of people from different areas with different disabilities and lump them together as one situation. That just does not work! My problem is...where do you even begin changing such a flawed system? I have no clue!

I have tried to contact my state representatives...that seems to do nothing (they were nice enough to give me the phone number for my drug company - Biogen, however, lol and tell me that they get these calls all the time). I even called a lawyer friend of the family that specializes in SSI/SSDI claims and was told that there is not much that can be done to change the system except to contact the state representatives, which I had already done. Talk about frustrating. How do you fight such a large system? I have been thinking about this a lot over the last couple of months (kind of in the back of my mind) because I feel like there should be something that can be done! I mean, if the state representatives office "gets lots of these types of phone calls" and even have the drug companies phone numbers on hand...that makes me think I am not the only one who is frustrated with the system. I am not the only one who has worked, paid in taxes, become disabled, only to be thrown into a system that doesn't care enough to want me to be able to maintain my health or support my family....after I worked to pay into that very system. So...I have been thinking....how did the people come together to fight and get the Family Medical Leave Act of 1993 created? That is what we need to do! That happened out of Washington State (where I live) you know. Somehow I need to find others, and we need to come together and fight this! I just need to figure out how to go about doing that...and the reality is, it won't fix my current situation. I will probably have used up my full 2 year wait period and will already be on Medicare by time we could get anything accomplished (if we were to even get it done) but if we could get it done...just think how many other hard working MS'ers who are currently paying taxes that may one day have to go on SSDI it could benefit! Not to mention all the others with other disabilities. That would be a great thing!


This concludes the 42nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 27, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 25, 2009.

Thank you.

Comments for this post.

WSJ reports - Elan CEO Defends Tysabri Sales, Citing 'Good Progress'

Elan CEO Defends Tysabri Sales, Citing ‘Good Progress’

By Jeanne Whalen
December 19, 2008 @ 3:06 pm

Elan is looking forward to the end of 2008. A slew of disappointments have grounded the biotech company’s once high-flying shares; they’ve fallen more than 70% this year.

Shareholders are grumbling, including one big one who is so fed up that he’s called for the ouster of CEO Kelly Martin.

As a snowstorm hit Health Blog HQ today, Martin braved the weather to come by, defend his record and talk about how he’s trying to turn things around.

First, Tysabri, the multiple sclerosis treatment Elan sells with Biogen Idec. The drug will have sales of nearly $1 billion this year. Sounds great, right? Blockbusters are hard to come by these days. But some shareholders think sales should be a lot brisker, given Tysabri’s efficacy advantage over other drugs.

Female MS Patient in the US dies from PML after 14 months on Tysabri.

I return from Christmas shopping and find this news bit (from Bloomberg Health New). My heart goes out to this patient's family.

If I remember correctly, this woman began experiencing symptoms of PML in September (information based on a comment left on Kim Fabrizio's blog).


Biogen, Elan Shares Fall After U.S. Tysabri Patient’s Death

By Elizabeth Lopatto

Dec. 19 (Bloomberg) -- Shares of Biogen Idec Inc. and Elan Corp. fell after Biogen said a multiple sclerosis patient who developed a severe brain infection after taking the drug Tysabri has died.

Biogen declined $1.26, or 2.6 percent, to $46.75 at 4 p.m. in Nasdaq Stock Market composite trading. Elan fell 35 cents, or 7.9 percent, to close at 4.10 euros in Dublin trading.

Cambridge, Massachusetts-based Biogen was informed of the American woman’s death two days ago, company spokeswoman Naomi Aoki said in an interview. The company reported on Oct. 29 that the patient had been diagnosed with the brain illness, progressive multifocal leukoencephalopathy. The death is the first among four cases of the brain illness reported since Tysabri was reintroduced in the U.S. in 2006.

“Given the expected negative attention that this death will attract in the medical literature and media, we believe there is increased risk to owning shares of both Biogen and Elan,” wrote Christopher James, an analyst for Rodman and Renshaw, in a note to investors.

Tysabri generated $597 million in sales in the first nine months of the year. It is Biogen’s second-best-selling medicine after the MS drug Avonex. Biogen and its marketing partner, Irish drugmaker Elan, pulled Tysabri from the market in February 2005 after three patients, two of whom died, contracted PML.

The patient had received 14 Tysabri infusions before becoming ill, Biogen reported in a regulatory filing in October. Aoki declined to comment on the type of treatment for PML the patient received.

Since Tysabri’s reintroduction, three European patients have contracted PML. Biogen and Elan reported one case on Dec. 15 and two others on July 31.

48,000 Patients

More than 48,000 patients have taken Tysabri, Biogen told investors on Oct. 21, when the company released its earnings. Chief Executive Officer James Mullen said 100,000 patients will be taking the drug by 2010.

PML is included in Tysabri’s prescribing information as a possible side effect in 1 of every 1,000 patients taking the drug. The condition occurs when the JC virus, named with initials for the first patient diagnosed with it, evades the body’s immune defenses and penetrates the brain, causing irreversible damage.

The U.S. Food and Drug Administration approved Tysabri’s return to the market in June 2006 because research showed the treatment is twice as effective as other MS drugs. At the same time, the agency mandated strict measures to monitor side effects.

Neurological Disorder

MS is a neurological disorder that robs people of muscle control and balance, sometimes leading to damaged vision and paralysis. The disease, which affects about 2.5 million people worldwide, is caused when the body’s immune system attacks the protective coating of nerve fibers.

Tysabri, given intravenously once a month, is designed to suppress the immune assault and is one of five immune-suppressing therapies that are known to cause PML. The others are Roche Holding AG’s CellCept, Biogen and Genentech Inc.’s Rituxan, Genzyme Corp.’s Campath and Genentech’s Raptiva.

To contact the reporter on this story: Elizabeth Lopatto in New York at elopatto@bloomberg.net

Last Updated: December 19, 2008 16:21 EST

**********
Another version of the same story:

Biogen says Tysabri PML patient dies in U.S.

Fri Dec 19, 2008 4:52pm EST
By Toni Clarke

BOSTON (Reuters) - Biogen Idec Inc said on Friday that a multiple sclerosis patient who had been diagnosed with a rare brain infection while taking its drug Tysabri has died, sending the company's shares down nearly 3 percent.

Biogen and its partner Elan Corp Plc disclosed the case in October. Naomi Aoki, a spokeswoman for Biogen, said the company learned of the patient's death earlier this week.

Tysabri is seen as crucial to the growth of both companies. The drug was temporarily withdrawn from the market in 2005 after it was linked with a rare brain infection known as progressive multifocal leukoencephalopathy, or PML.

The drug was reintroduced in July 2006 with stricter safety warnings.

So far, there have been four new cases of PML, an infection rate that is still less than the one in 1,000 warned of in the drug's label. Nearly 18,000 patients have received at least a year of Tysabri. But investors are watching to see if the rate increases, and they are also looking at how successfully patients can recover.

"While we continue to believe the benefit/risk profile of Tysabri as favorable, we believe this death could lead the FDA and physicians to alter how future PML cases are managed," said Christopher James, an analyst at Rodman & Renshaw.

The patient who died was a United States patient who had received 14 monthly infusions of Tysabri as a stand-alone treatment. Previously she had received other therapies.

After developing the brain infection, the patient was treated with a procedure known as plasmapheresis, in which blood is removed, cleared of the drug, and replaced.

While the U.S. patient died, two patients who developed PML in Europe, and whose cases were announced in July, appear to be recovering following treatment, even though one had not been expected to survive. Earlier this month, Biogen announced that a fourth patient had developed PML. This patient, in Europe, is still alive.

The European patient that had not been expected to survive had developed a condition known as immune reconstitution inflammatory syndrome, or IRIS. This occurs when the immune system, in eliminating an infection, produces an excessive inflammatory response that can worsen symptoms.

The patient was treated with corticosteroids.

Geoff Meacham, an analyst at J.P. Morgan, said it seems likely the U.S. patient, having gone through plasmapheresis, died of IRIS, and that since the European patient recovered, it might be possible to manage IRIS using steroids and close monitoring. Biogen declined to confirm this theory, citing patient privacy.

"In our view, the rate of PML is now critical to assessing the launch trajectory, and the regulatory outlook, should it stay in the 1/1000 range," Meacham said in a research note.

© Thomson Reuters 2008. All rights reserved.