Today I am honoured to present a guest blog from my friend Stella who with her sister Jan writes the HDtrainwreck blog.
HDtrainwreck was the first blog I read on a regular basis, so you can imagine how happy I was when she agreed to write a guest column for Life On My Own.
HD-- The Rich and The Poor
Installed a swimming pool?
Since HD entered by life last June, I have become a part of a wonderful community of people. I can't afford to install a swimming pool, and neither can most of them, I imagine.
I was thinking about this. I mean, if your great- grandpa had HD and your grandma had HD and your mom had HD, then how can anyone keep up with medical bills and earn a living? Statistically speaking, HD means only 50% of these family members even live long enough to make it to retirement age. The majority of HD families can relate to this pattern. Not to mention the current state of the economy, and the fact that many cannot get the insurance they need. Most of us are in shitty positions, financially speaking... not to mention all the other plain living-with-HD stuff that goes along with it.
Some people with HD can afford to buy the supplements, like creatine and CoQ10, but certainly not everybody. These supplements are not regulated by the FDA and therefore a doctor can't prescribe them to you, right? Like my doctor told me to start taking creatine 5 mg daily and work up to 10 mg daily. I have to pay out-of-pocket for this, because he can't prescribe it to me. And COQ10 is really expensive! Who the hell can afford that? Glad he didn't recommend it, too.
I have a friend in my HDSA support group who is the caregiver of her HD-positive husband, and she is also raising 2 children. We live in Maine. Traveling to either Center of Excellence in Boston (and there are 2), 4 hours away, is cost-prohibitive for her, not to mention the fact that she has 2 children she is taking care of as well. So even if she could afford it, would she even have the time to get there for regular appointments? Her husband sees a local neurologist, and does seem to be in good hands, thankfully... but is this always the case?
Not being able to get to a Center of Excellence because it is cost- (or TIME!) prohibitive is a major problem. This is a group of people who could be participating in studies and seeing experts, but aren't.
My father has HD and travels to Houston, Texas to the Center of Excellence there. Luckily, my parents are able to afford a hotel for a night for each visit, but not everybody has this privilege. Just as I, myself, have the time and financial means to travel the 4 hours to Boston, I am very well aware that not everybody can. And I should also mention that this is going to become more difficult as my own disease progresses, and I eventually quit working altogether. And lose the ability to drive. And then half of my 3 kids will statistically have the same disease. And then I'm going to have full-blown HD and say difficult and obstinate things like, "I'm not going there anymore. It's too far." It is a financially detrimental disease.
I wonder if because my family (before my father) had no incidence of Huntington's Disease, maybe we are more privileged than most in this community.
A while ago my sister wrote a blog about her HD support group meeting from hell. This is actually a portrait of differing socio-economic classes, and the way they manage Huntington's Disease in their own lives.
Woody Guthrie-"Jesus Christ"
It appears as though the HDSA has been criticized in the past for not doing enough for individual families with HD, and instead focusing on research. That is what it is. But frankly, it is scary to me when a drug company steps in and creates opportunities for people, like Lundbeck has for HDSA. For the HDSA conference this year, Lundbeck has made a generous donation for a scholarship fund... but should that be left up to a drug company? As a registered nurse, I have learned not to trust drug companies, because they are a for-profit company with a definite bottom line. My father has started taking Xenazine, which helped immensely with his movement disorder, but took away his ability to engage in conversation at all, and also took away his sense of humor and personality. Is that worth it? Incidentally, I just applied for the Lundbeck scholarship to attend the conference this year and am curious to see what comes of it. I would never go so far as to say that we should turn our back on financial help when it is offered, or not try a drug when it is offered, but maybe we should all remember what Lundbeck's motives actually are.
SO a few months ago my brother-in-law and I had this great idea about starting a non-profit to help with the many personal financial needs of HD families. We soon discovered we were beaten to it by the folks over at Deshalamar. I feel as though these types of self-directed and self-managed funds are important to the HD community, and we should support them whenever possible.
As an RN, I believe HEALTHCARE FOR EVERYONE IS A BASIC HUMAN RIGHT, not a privilege. We need more Centers of Excellence, and more people attending them. How can we accomplish that? Socialism?
Billy Bragg-"Christ For President"
Please visit Stella and Jan and tell her Paul sent you!