A letter to my representatives

From: The Liz Army

To: Rep. Tom McClintock (R), Sen. Dianne Feinstein (D), Sen. Barbara Boxer (D)
Subject: This is my story

Message:
I am an unmarried, 30 year-old woman who was diagnosed with stage 2 brain cancer and epilepsy in 2008.

Due to two brain surgeries and cancer treatment I lost my job and relied on COBRA to continue my health coverage. I applied for state unemployment, and my "income" dropped by 30% while my bills skyrocketed due to a COBRA payment of $510 each month.

Don't get me wrong, I am thankful for programs like state unemployment and COBRA, but overnight I became a person with a pre-existing condition. Being diagnosed with a highly fatal disease at a young age is complicated. Even when I kick cancer's butt I still have to disclose my cancer history for the rest of my life and be potentially discriminated against by insurance companies.

After re-learning how to walk and going through six months of chemotherapy I started a new job last August. Thankfully, I now have health coverage through my employer, but I still have another year and a half of chemo left (chemo takes a long time with brain cancer).

Statistics say my form of brain cancer will morph into a more malignant grade within 2-5 years. Only 10% of people diagnosed with my cancer live past 5 years after diagnosis. This makes me wonder what will happen to me if things got worse.

If I can't work, I don't have health coverage. How will I afford the care I need when my body begins to shut down?

I am concerned that the Senate bill will leave too many people (like me) unable to afford quality health care, that it will place an additional burden on working people by taxing our benefits, and that it will not hold insurance companies and employers accountable.

I believed in the change we called for in 2008 – and I believe in it today. I hope you will help your constituents by fighting to improve affordability, accountability, and accessibility in the final health care bill and beyond.

Sincerely,
Liz

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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