Friday, September 13, 2019 -
A Navy veteran (John Weigel), struggling to pay off his medical bills said he was contemplating suicide while speaking at a Bernie Sanders town hall in Carson City, Nevada. The veteran said Friday his Tricare was taken away. This left him with more than $130,000 worth of medical bills.
As you will hear in the video below (courtesy of CNN):
John Weigel: I can barely take care of myself. And I do not have the energy to fight these people...
Bernie Sanders: How are you going to pay off a hundred...
John Weigel: I can't. I can't. I'm going to kill myself...
Bernie Sanders: Hold it, John. Stop it. You're not going to kill yourself. All right. Stop it...
John Weigel: I can't deal with this. I have Huntington's disease.
Watch the full exchange. Article continues below.
No matter what your political color or stance is, we must do more for our people who are suffering like John Weigel. Sadly, within the Huntington's disease community the rate of suicide is on the rise.
As per the HDSA website: "Studies of suicide in HD have largely focused on the proportions of deaths attributable to suicide. These studies have produced quite varied results with rates between 0.6% and 10.1% of deaths in those with HD (Fiedorowicz, Mills, Ruggle, Langbehn, & Paulsen 2012). The overall suicide rate is about one percent so it is increased in HD by up to ten times the national average."
In 2017, the Huntington's Disease Parity Act was finally reintroduced. As per the HDSA on the Parity Act: "Congressman Adam Kinzinger (R-IL) and Congressman Bill Pascrell, Jr. (D-NJ) reintroduced the Huntington’s Disease Parity Act (HR. 2589) in the House of Representatives. Simultaneously, Senator Kirsten Gillibrand (D-NY), along with Senator Bill Cassidy (R-LA), reintroduced the legislation in the Senate (S. 1197). The Huntington’s Disease Parity Act is a bipartisan bill that ensures Medicare is made available to people with Huntington’s disease (HD) immediately upon qualification for disability."
According to "Suicidality in Huntington's Disease" (pg. 12) by Hubers, Anna Alida Maria (Marloes):
"Compared with the general population, the risk of dying by suicide was 2 to 8 times higher in HD."
Hubers set out to study a large number of HD patients across time to understand suicide in HD. Hubers wonders - what factors lead to HD mutation carriers thinking of, or attempting, suicide? About 20% of HD mutation carriers studied by Hubers, whether or not they have symptoms of HD, thought of suicide in the last month. The studies Hubers is conducting suggest that HD patients who report being depressed seem to have higher risk of suicide. Hubers recommends HD patients with depression should be carefully watched for signs of thinking of suicide, based on increased risk.
According to Huntington's Disease News "Suicidal behavior, in particular, can affect up to 20% of symptomatic and pre-symptomatic patients. Suicide is 12 times more frequent among Huntington’s patients compared to the general population. This highlights the importance of better understanding and recognizing potential risk factors for suicide in this population, and finding strategies to prevent it."
Over the last few years, we have heard the tragic stories of many of our Huntington's patients who have committed suicide. We must not make this a political conversation; however, what is the answer? Do we have answers, or do we have more questions? Are we willing to have a conversation which may lead to providing healthcare to all? Or, are we adamantly going to stand firm and aligned to our blue or red colors and ideologies? I don't have the answer, but the importance of healthcare in the United States of America must take precedence regardless of our political lines, especially for those who have served in our military. I am unsure as to the conversation which took place between Mr. Sanders and Mr. Weigel following their public exchange. However, many of us within the Huntington's community struggled or are still struggling with medical expenses. Unfortunately, Huntington's disease is still considered a "rare" disease and the process to obtain medical coverage can be a tedious and extremely difficult process. Moreover, the majority of the population is unaware of what this disease is. This must change.
Personally, it doesn't matter to me if you are batting for the blue team or the red team. What does matter to me is finding the answer to Navy veteran, John Weigel's dilemma. Shouldn't this concern all of us?
*updated with the addition/resource of the Huntington's Disease Parity Act (HR.2589)
*updated link for Tricare