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The Personal and Public Politics of Multiple Sclerosis


I am NOT a political person. I do not debate government 

issues or worry my already foggy brain with details that only 

serve to further confuse me. I just want to live peacefully in 

my own little world where disease, terrorism, and crime do 

not exist. Stick a lollipop in my hand and read me a bedtime 


Well, that's not possible and  I have had to come to terms 

with this reality. People get sick. Bad men hurt innocent 

victims and politicians rob us blind. It is what it is.

Until my retirement in June, I enjoyed what I felt was a 

wonderful insurance plan. In West Virginia, public employees 

are covered by PEIA. My coverage was 

directly taken from my monthly paycheck and I had very few 

problems with plan payment and medical bills. That was not 

the issue upon retirement. All of the sudden my co-pays and 

plan coverage nearly doubled. I could no longer afford 

PEIA. My plan is a family plan and PEIA only covers 

medical. Dental and vision are optional.



No way! We are a family of certified eye glass wearers. My 

teenage son is still growing and his teeth are important to 


So, the first few months of my supposed "golden years of 

retirement" were spent looking for a different health 

insurance coverage. I already had two strikes against me: 

an incurable disease and a family to protect.

Fortunately, I found a plan designed to adequately cover 

health, vision and dental. All for much less than PEIA offered 

for just health. To good to be true? For now, we are okay; but 

the future is questionable.

Insurance companies are famous for dictating what 

medication a person can and cannot take. Neurologists 

attempt to make careful medication recommendations for us. 

These recommendations involve extremely volatile and 

expensive choices. MS medications are not over-the-

counter painkillers and, yet, we are expected to "suck it up" 

and pay outrageous fees as human guinea pigs in the name 

of drug research. 

I don't know about you, but I do not participate in MS drug 

therapy wearing a blindfold. I try to make educated 

decisions based on research and careful thought as to the 

possible side-effects of said drug. It is NOT the decision of 

an insurance company or government official as to what 

drug is allowed to enter my system. The ramifications of so 

many meds on the market are seriously frightening. 

This is NOT a game.

I get to decide about taking a drug that could possibly help 

me or possibly put me at risk of PML.

                                                       Multifocal Leukoencephalopathy


Progressive multifocal leukoencephalopathy (PML) is a rapidly progressive neuromuscular disease caused by opportunistic infection of brain cells (oligodendrocytes and astrocytes) by the JC virus (JCV).


PML is an opportunistic infection associated with AIDS and certain cancers. It occurs in people with inadequate immune response and carries a poor prognosis. The incidence of PML, once quite rare, is rising as the numbers of people living with persistently compromised immune systems rises. An estimated 2-7% of people with HIV disease will develop PML. The infection also occurs among people undergoing long-term chemotherapy for cancer. PML is not considered a contagious disease. According to the Centers for Disease Control definition of AIDS, PML in the presence of HIV infection is sufficient to form a diagnosis of AIDS.

If you think working with insurance companies is fun...try to 

work with disability. That is another beast all its own and 

fortunately one that I have not had the displeasure of 

befriending. My sincere sympathy goes out to those who are 

fighting with that portion of this disease. We should not have 

to put our life at risk in order to survive.

MS is an expensive disease to treat. Direct and indirect health care costs range from $8,528 to $54,244 per patient per year in the United States. MS ranks second only to congestive heart failure in terms of costliness compared with other chronic conditions.

MS is a battle and we are Warriors. Warriors survive,

I think I mentioned recently that March has brought to me 

so many gifts  during  MS Awareness 

Month. I have had the opportunity to share, through local 

media,my story with my award winning book Have MS. 

What's Your Super Power? have met several fellow 

warriors I would not have known otherwise. My personal 

 fundraising goal is nearly met and it's not over yet!

And I have read...more than ever.

If you do nothing else today, check out

Kate Milliken is my new hero. She has created a wonderful 

planet on which to vent and share MS stories. The inspiration

found here will make you forget your insurance woes for a 

while and possibly lead you to some much needed answers.


Kate Milliken
Kate Milliken is the founder of, and for the past few years, has been immersed in the personal stories of patients and caregivers living with MS. Kate’s own RRMS diagnosis allowed her to see the glaring need for authentic video moments in the illness space that could give people perspective, support and hope.
Kate’s diagnosis also opened an opportunity to work with the National MS Society. She produced the We Keep Moving video series ( and continues to work as an on camera host with MS Learn Online, MS researcher webcasts and with additional projects for the National MS Society website. Pre- MS, Kate founded Milligrace Productions, a video production company that specializes in testimonial video, and has worked in television for more than 15 years; off camera as a producer for the View and VH-1 and as a correspondent in alternative sports (such as snowboarding, mountain biking and monster trucks) where she worked for Fox Sports NET, TNT, TNN the Outdoor Life Network and Oxygen.

Kate lives in Bronxville, NY with her husband and two young children. Her MS is currently stable.



Back to the original topic of this post...I do tend to get side-tracked.
One place to find reliable information concerning health insurance coverage is
Just about anything you need to know can be unearthed on this site. At least it is a place to begin. is the site to learn more about Preexisting Condition Insurance.

Before cashing in the life insurance policy that you originally invested in for future family situations, make sure that you consult a professional financial planner. The national MS Society is very helpful and offers free financial education and advice services. Call 800-FIGHT-MS to speak with a consultant.

It is important to know all your options in order to take the best advantage of your health insurance plan.

There is no wrong question, so ask as many as you can. At the end of the day, no one knows your needs as well as you do. Achieving a comfortable balance in your daily life is crucial to  your well-being.

I left my beloved job of teaching when I realized that the work place was no longer safe or productive for me. Sure, my family and I are adjusting to a significant financial change; but in the long run my retirement will be beneficial for the quality of our daily existence. Survival requires a few sacrifices along the way. That is what warriors do: sacrifice.

What can you do? Call your state and national government representatives. Make yourself heard. Fight for your right to survive. You are worth it.

Whew! For someone who is normally a silent member of society, I sure managed to spew a full page of words today. I think I'll take a nap!


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