Living Well With and the Living Hell of Epilepsy

For many, many years, efforts to remove the stigma that epilepsy carries focused on a "living well with epilepsy" approach. "Normal" people who also "happened" to have seizures but who otherwise lived "normal" and productive lives were paraded out in advertisements and marketing materials, and while this helped to dispel myths about epilepsy, the approach neglected a significant number of people whose lives were severely affected by the disease. What happened because of that is a woeful under-funding for research into the causes of and cures for the epilepsies, and, equally as important, a lack of knowledge and awareness of just how serious the disease can be, including a higher incidence of death than breast cancer. The mental health aspects of the disease -- for both the person suffering the seizures and the parents and siblings of that person -- are often unacknowledged despite grim statistics, and the work I've done recently with national groups trying to remedy the inadequacies of the healthcare system have only just pecked at the surface. I call that number -- the nearly 30% of people with epilepsy whose seizures are not controlled and whose lives are significantly impacted by the diseases as those who are experiencing The Living Hell That is Epilepsy.

With that in mind, the Los Angeles affiliate of the Epilepsy Foundation of America produced the following video that they showed at their most recent fundraiser. I think it deserves to be seen and shared and would appreciate you doing so if you have a moment.

Drug Mule, Part 3,456,896 in a series**

Good Lord, ya'll!

I think I've graduated from drug mule to racehorse! I found out about a non-profit organization that gives grants for certain medical conditions to cover unaffordable medical costs, so I applied and received word that we will be receiving financial assistance for the costs related to Sophie's diagnosis. This means I'll be able to go to our local Rite-Aid and pick up the Onfi prescribed to Sophie instead of engaging the help of Canadian friends. I heard about Caring Voice Coalition, ironically, from a representative of the drug company that makes Onfi. He got my number from our neurologist who has been busy helping me to figure out a way to get this drug to Sophie without resorting to swallowing tiny packages of it and slipping over the border that separates The Sane from the Insane (that would be Canada and the United States). My first reaction when The Man From Big Pharm called was to pull out my breadstick and start taking deep inhalations. Let me get this right, I remember saying to The Man From Big Pharm, instead of lowering the cost of your drug so that normal people can afford it, you donate tens of millions of dollars to non-profit foundations to pick up the cost of said drug? The Man From Big Pharm laughed uncomfortably and told me that age-old expression that Little Men and Women of Industry are all trained to say: I understand your frustration. Reader, you know me so I'll leave it to your imagination what the rest of the conversation entailed. I eventually thanked The Man from Big Pharm for listening to my tirade, took down the name of Caring Voice Coalition, sighed and moaned for a bit about the insanity of it all and then investigated, filled out the application, sent it off and waited.

Good Lord, ya'll! We did get the grant -- a sizable one that will cover the expense of Onfi for the near future.  I just have a few more papers to sign, some telephone calls to make and I think we're set! I am grateful for the help of our neurologist in pleading our case with Big Pharm. I am indebted to the two Drug Mules that brought Sophie's medication from The Sane across the border to The Insane. I am filled with gratitude for the sweet, efficient woman assigned to our case at Caring Voice Coalition. I'm even a tiny bit thankful that The Man from Big Pharm allowed me a holy and righteous rant. I'm also grateful to all my readers here and just know that you'll allow me to continue being a bit mulish about Big Pharm in general.




**If you're new to this blog and want the back story, read where it all started and my favorite post  HERE. Then read HERE and HERE. If you search for all my posts that contain the words "drug mule," you'll find a veritable bonanza.

Let's Talk Some More - Part 2

Defendants, Nuremberg War Crimes Tribunal, 1945

1. Whatever proportions these crimes finally assumed, it became evident to all who investigated them that they had started from small beginnings. The beginnings at first were merely a subtle shift in emphasis in the basic attitude of the physicians. It started with the acceptance of the attitude, basic in the euthanasia movement, that there is such a thing as life not worthy to be lived. This attitude in its early stages concerned itself merely with the severely and chronically sick. Gradually the sphere of those to be included in this category was enlarged to encompass the socially unproductive, the ideologically unwanted and finally all non-Germans. But it is important to realize that the infinitely small wedge-in lever from which that entire trend of mind received its impetus was the attitude toward the nonrehabilitable sick.

-- Leo Alexander, American psychiatrist, neurologist and key medical advisor at The Nuremberg Trials. Dr. Alexander wrote part of the Nuremberg Code which provides legal and ethical principles for scientific experiments on humans.



2. Ontology, the study of the
being, holds that life is a supreme good that cannot be
measured and consequently cannot be graded. On the opposite,
health can be assessed and graded. Physicians are
constantly establishing whether the health of their patient
is improving or declining. However, the value of human life
cannot be measured, and is not determined by the quality
of an individual’s life at a particular time point (23).

-- from a paper titled Transplantation and Mental Retardation: What is the Meaning of a Discrimination

3. UN Convention on the Rights of Persons with Disabilities: Article 25 - Health: States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. Article 10- Right to Life: States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

United Nations' Convention on the Rights of Persons with Disabilities

United Nations' Convention on the Rights of Persons with Disabilities, 2007

If you're interested in helping out Amelia, sign the petition at Change.org HERE.

Let's Talk - Part One