By Melissa Fern
On a Saturday night, with college parties erupting all around my apartment complex, I have decided to write to you. Instead of searching graduate programs at universities I’m interested in, instead of grabbing drinks with a friend after a long day at work, instead of inviting friends over for a movie… I am writing this letter for you. To you. And I am begging you to listen.
This is my plea to please pass the Parity Act. We are now halfway there after Social Security updated the guidelines for Huntington’s Disease rather than the outdated “Huntington’s Chorea” definition that ruled for the last twenty years. Now, we just need the two-year waiting period waived for diagnosed patients to receive Medicare.
I have only met with Congress members twice now and feel I have hardly had the chance to truly share my story with you. If I can hold your attention for longer than the three minutes I got during some of those meetings, if I can convince you to finish reading this post, my hope is that you will finally understand how important this simple piece of legislation is. The Huntington’s Disease Parity Act is necessary for a community that is small in numbers but huge in my heart. The community that this legislation directly impacts is my family, my friends, my caregivers, and other people who I may not have met yet but cherish and believe in during this fight. They are already dealing with more than they ever bargained for but they are the strongest and most deserving people I know.
The first time I ever went to D.C. was to fight to pass this bill. I got the tour of a lifetime and was able to walk in the tunnels under the Capital and snag a picture in front of the White House. But at that time, I was exactly a week away from learning the results of my genetic test. I still had hope that my genes were negative for Huntington’s Disease. I was able to tell my story as a “what if” rather than “this is reality.” I was still able to say that I was just another person at-risk for HD, another person that you could act like you cared about.
On June 6th, it was revealed to me that I inherited the gene mutation that would eventually cause Huntington’s Disease. I thought my life would do a 180 after those couple of seconds it took for the doctor to get the words out. I assumed everything would change, but in reality, everything was still the same. My genes had been that way since before I was born, it was just my knowledge of them that changed. And now, after finding out the truth, I knew that all I could do was fight. For myself, my future, and all of my loved ones who would be affected by my disease.
On July 20th , I met with Congressman Levin (D-MI) with five other people impacted by Huntington’s Disease by my side. I sat there quietly as you, Congressman, told me how important this bill was and how worthy this community was for this waiver. When you ended the meeting, though, you tried to convince us that it would probably never happen because once “we” get this, “everyone” will want it. What you didn’t know when you said this, what you didn’t give me time to say, was that just a month before meeting with you, I learned that I had inherited the HD gene from my father. You assumed I was there for another family member or for the community in general when in fact I was there for myself. You wished me luck for after graduation and seemed to question me when I mentioned I didn’t have definite plans yet. At 21 years old, 4 months away from graduating from Ohio State University with a Bachelor’s of Science in Psychology and Women’s, Gender, and Sexuality Studies, you judged me for not having my life planned out yet.
Congressman, please take a moment and think back to when you were 21 years old. Remember when you were about to graduate with your first degree. What were the top three things on your mind? I’ll take a few guesses based on what I see with my peers today: How about the first week of the semester coming up? Next week’s exam? The next frat party or football game? Applying for another internship? Your graduate school options? Who your future wife or husband might be?
Imagine balancing all of that on top of the realization that you have at least 20 years less of life, of retirement, of career-making, than all your friends and classmates. Would you have all of your life planned out yet?
Now add in everyday anxieties. Not wanting to get out of bed, breaking down if something small goes wrong in the morning before work, panicking every time you have to get in a car, and feeling physically sick from the amount of schoolwork ahead of you for the night. Some of these may be part of the normal college experience but they become elevated when your brain is infected by disease.
Add in the stress of the college debt waiting for you after graduation. This is normal for a lot of students these days but they have 20 more years of time spent on a career, building a 401K, and paying those loans back before having to worry about the next life step. My financial advisor told me straight up that I should not start a 401K based on my situation. Why? Because I will probably die or need to take money from it before the normal retirement age and the additional expenses would be so harsh that the return would be almost nothing. Imagine being 20 years old and having someone tell you that you will probably die before you retire. How do you handle that and still balance “normal young-twenties’ activities”?
Next, start worrying about what you’re going to do after you graduate because those loan payments are coming soon. Do you go to graduate school to try to make more money in the future? Is that worth the time and money investment if your life is going to be shortened? Do you search for a job that makes you more money or a job that you truly love? When your time is limited, what becomes more important?
Don’t forget that whatever you do, you need health insurance and you need to get it through a job or a spouse so they don’t ask “the question” about if you have tested or not.
Oh and about that spouse… Do you marry the person you love sooner rather than later because you know you have less time and you could potentially wreak some of the legal benefits? Is committing to marriage strictly for the legal benefits an immoral decision to make? Or do you put it off in-case they can’t handle you once your anxiety and other symptoms worsen? You know you won’t be able to handle the cost of divorce down the road, either.
You need to start saving money for your future medical bills so you don’t put your family in debt. You need life insurance and long-term care disability insurance but you’re too young for any company to grant it to you yet.
And your dad’s symptoms are getting worse. Do you move back home to spend more time with him while you still can? And if you move back now, you’ll be stuck until he’s gone. At what point is it okay to be selfish and follow your dreams, move to new, far-away places, and travel the world? Is that time for exploration and self-discovery more important than the comfort of your own family?
Finally, because your dad has been sick for 14 years, he has no solid income and he had to go bankrupt before he could get health insurance through the government. Even now, he can’t afford the medications or neurologists that would really help him. Will that happen to me, too? What will happen to my brother, both financially and emotionally, if he has to take care of me and dad both? Does he deserve to have his dreams ripped away from him because the government denied me the basic right to proper health care, despite my genetic code? What happens to our family if he inherited the gene, as well?
To tell me that I am deserving of the right to health care but blatantly say it will never happen seems like the contradiction of a life time. I’m not asking the government to hand over everything to me. I want to make a life for myself and be proud of my accomplishments until I can accomplish no more. I just want a security blanket, a guarantee that I can have access to medications that could help my symptoms or cure my disease when they become available. Just in-case I don’t have time to make these decisions or set up the right insurances for myself, the Parity Act helps ensure the financial security for my family that will be taking care of me. It would allow me to breathe and maybe feel like a normal college student again. I could focus on getting my first “real adult job” or even start seriously considering graduate school, spending more time with the people I love, and studying for my last exams.
In order to understand where I am coming from and why this bill really is so important, you need to think about where you were at 21. You need to imagine yourself in my shoes because there is no other way this bill will be passed. Your empathy and emotions as a human who was once 21 needs to take over your trained political strategies and allow you to look past potential costs and forget “who is next.” In the last 8 years, not a single other long-term disability or disease has asked for the same waiver that Huntington’s patients are asking for. You need to be able to see that this is a problem for more and more youth as they test at younger ages in order to start preparing for the future because right now they have no sense of security. This is an every day worry for people who are suffering right now. Passing the Parity Act could practically slip under the rug, without much cost and without much attention politically, but it could impact the lives of so many strong and amazing people who need it.
Please, Congressman Levin and the rest of your colleagues, if you have made it this far in your reading then I know you have some heart involved with this topic. You need to be able to imagine the situation for yourself and your own family and see the urgency in getting this bill passed. You must fight with us.