Advocacy, ankylosing spondylitis, chronic disease, chronic pain, Current Events, disability, Health Insurance, Healthcare, Medi-Cal, Medicaid, Patient Advocacy, Politics, public speaking, spondylitis, spondyloarthritis

I Told My Healthcare Story at a Press Conference Today

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Today, Congresswoman Doris Matsui hosted a press conference in Sacramento in response to the Graham-Cassidy healthcare bill. I was invited to share my healthcare story as a Chronic Disease Patient Advocate alongside several elected officials in attendance, including the Congresswoman, California State Senator Dr. Richard Pan, California State Assemblymember Kevin McCarty, Sacramento Mayor Darrell Steinberg, and Councilmember Angelique Ashby.

Two leaders
Charis Hill and Congresswoman Doris Matsui

These were my remarks:

Good morning. My name is Charis. I’m a writer and a chronic disease advocate.

In 2013, I was diagnosed with Ankylosing Spondylitis, or AS. It’s a disease that causes inflammation in my joints, especially in the low back and spine. It causes fatigue, it can damage my organs, and as it progresses can completely fuse my spine into a single column of fragile bone.

AS is extremely painful.

Imagine what it’s like to break a bone. Now, imagine that level of pain all the time, throughout your whole body, for the rest of your life. Welcome to my world.

When I learned I had inherited AS from my dad, I was working part time with no health insurance. I didn’t want to be charged more or denied coverage for a pre-existing condition, so I waited until after I got health insurance to be officially diagnosed and begin treatment.

Fortunately, nine months into my diagnosis I got a cheaper and better plan when the Affordable Care Act came along. The new plan was a lifesaver – I could finally actually afford the treatments to slow down my aggressive disease!

And I’m not kidding when I say aggressive! Even with good care, I became disabled within a year and couldn’t work. I qualified for Medicaid and transitioned into the program.

Currently, my disease is managed as well as it can be.

There are three crucial medications that help manage my symptoms and slow down my disease. One of them is a chemotherapy drug. Another is a pain medicine. And the most important one is an infusion that I get at a cancer center every eight weeks. There aren’t substitutes or cheaper or alternative remedies that help me, or that I can afford. Without insurance, my medications and treatments would cost thousands of dollars every month. Who can afford that? Not me.

And it’s not just medications I need. Many people don’t realize what it takes to manage a chronic disease. I see at least five doctors regularly, including for depression and post-traumatic stress disorder, and I receive In-Home Supportive Services (IHSS) several times a week to help me live independently.

Currently, my care is covered by Medicaid.

If federal funding for Medicaid is cut, I may not lose “coverage,” but I will lose care.

Cuts… will restrict access to necessary treatment.

Cuts… will restrict access to my doctors.

Cuts… will restrict access to assistance that helps me live independently.

Cuts… will cause my disease to progress faster.

Cuts to Medicaid could kill me!

And this wouldn’t just hurt me, but all of us. California couldn’t replace lost funds without significantly raising taxes and re-allocating our complete state budgets for things like corrections, higher education, and state parks – combined.

Healthcare is a subject that is important to all of us; I think we can agree on that.

And no matter where people stand on the issue of reforming the healthcare system, it’s not something to rush and shouldn’t be passed as a dramatic partisan stunt. It’s not ethical, it’s not smart, and it’s not a good look for the Republican party.

Healthcare is a human rights issue and my life is being threatened. Do I not matter?

The most important thing I should be doing is caring for what health I still have, not fighting for the right to have healthcare!

Please, reject this dangerous Graham-Cassidy bill.

News and social media coverage of the press conference:

Fox 40 Sacramento: Local Officials Rally Against Obamacare Replacement Bill


 

(This will be updated if more coverage from the event becomes available)

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