Editor's Note: As of September 20, 2017, the Senate is considering a health care proposal that would once again significantly harm the Parkinson's community. This new proposal, the fourth in a series of health care reform proposals, could do lasting damage to the health care system and would restrict access to care for people with Parkinson's. Read B.J. Bement's personal perspective on how the Parkinson's community relies upon accessible and affordable health care. Then, call or email your senators now and urge them to oppose this damaging legislation.
In this blog, Benjamin "B.J." Bement, a person from Louisiana living with Parkinson's, shares his thoughts on the health care reform proposal in the Senate. B.J. has advocated for several years and believes taking action is key to supporting the Parkinson's community.
Currently, I am one of the "lucky ones." I have good health care because of Medicare and supplemental insurance through my wife's employer. However, this wasn't always the case. Before I received an official Parkinson's diagnosis, I was experiencing symptoms that forced me to leave my job. I had used up all of my personal disability coverage, no longer had insurance through my employer and was paying exorbitant premiums through COBRA.
The cost of my health insurance and loss of my income caused me to miss payments, skimp on life's necessities, and skip medicine doses and meals to make ends meet. It was a long process that almost cost me my home. Once diagnosed with Parkinson's disease (PD), I started receiving Social Security and righted the financial ship. Now, I am concerned that Congress will pass legislation that could sink that ship. What if my wife lost her job? It could happen in an instant, and my supplemental coverage would be gone. Would the provisions provided in this new legislation, called the Better Care Reconciliation Act (BCRA), protect me? I think not.
I'm concerned about BCRA provisions that would limit care for people with pre-existing conditions, including Parkinson's. Who knows how much I will have to pay for insurance in the future if my health care is not protected. Many of us with PD are on a strict budget. Any sudden increase in premiums or copays would be a huge detriment to our quality of life.
Additionally, the BCRA would change how much insurers are allowed to charge older Americans. Current law says older patients' premiums can be no more than three times the cost of those offered to younger individuals, but the BCRA would change this to five times. On top of that, the bill's provisions could reduce funding for some parts of Medicare. As the age of our population rises, coverage and funding for older Americans' care must increase, not decrease.
We must speak up to ensure Congress does not pass legislation that harms the Parkinson's community. I've been a policy advocate for several years. Prior to starting this work, I thought Capitol Hill was an impenetrable wall. But I've found that members of Congress really do seek input from their constituents.
I was recently part of a health care roundtable in my representative's district, which provided me with an opportunity to share my needs and concerns with my legislator. Because I had participated in the annual Public Policy Forum in Washington, D.C., called my lawmaker's office to voice my opinions on various issues and attended several town halls, I'd developed a relationship with my representative and his staff. This led to my invitation to the roundtable. Beforehand, I polled my friends with and without Parkinson's on their wishes and concerns for health care reform. I took this information to the event and felt privileged and honored to be able to represent them.
Without constituents calling in, Congress will steer its own ship. While Congress members may not remove their hands from the rudder, we can rest our hands on top of theirs to make the journey a bit steadier. The more hands steering the ship, the more likely it is that the proper destination will be found.
Getting involved in advocacy work is easy and I've met so many wonderful people doing it. Sign up on your lawmakers' websites to receive their emails. Get your Congress members' phone numbers and keep them on your refrigerator. A simple call to their office or a visit to their social media pages will keep you up-to-date on opportunities to interact with them. Check out your local newspaper's website for public forums to attend. You also can schedule in-person meetings or attend town halls when Congress is in recess and your lawmaker comes back to your state. My representative told me that visits like mine are what legislators live for. Committee meetings and budget numbers take up most of their days. To see a smiling constituent face telling them about their concerns is a breath of fresh air.
If you don't use your own voice, who is going to speak for you? Make sure you're heard.