Health care is one of the most crucial investments, now more than ever as massive attacks on health care have begun to impact families across the country. Over eight million Americans just lost their health care coverage after Republican leaders in Congress made massive health care cuts. Now, more than half of Americans can't afford health care and claim long wait times for appointments prevented or delayed their ability to seek necessary health care in the past year. Our California member Amber shares her health care story with me, as both a health care professional and as an adult living with chronic illness as well as the importance of advocating for robust health care coverage and protections.  

Amber’s Health Care Journey

In the early 2000s, she was kicked off her mother’s insurance and was forced to go without health care coverage for three years. In 2007, Amber was diagnosed with relapsing-remitting multiple sclerosis (RRMS), and had to start on several drug therapies. The first therapies were $10,000/month, and luckily, she had the co-pay assistance program through the drug therapy company that would cover what her health insurance couldn’t. Fast forward approximately 20 years, she is still running into a similar issue. The drug she is currently on costs $194,000/year that she receives twice a year in five-hour infusion sessions near her hometown. Then, the oncology office offered to move her treatment closer to her office for a twin drug in a one-hour infusion session, which was a much better treatment plan for herself. However, because they wanted to charge her bill as a hospital charge versus a clinical charge, she was forced to find care elsewhere. This was a difficult adjustment after building a care team she was comfortable with.

The treatments for her RRMS also bottomed out her immune system, which led to getting COVID-19 and almost dying as well as having to re-learn how to walk. She had to juggle multiple attempts of navigating her health insurance denying her coverage for authorizations for life-saving medications and appeal, which was further declining her health. She was not considered healthy enough to get the treatment for her RRMS, but not sick enough to get the treatment to make her safe enough to get her main drugs. She has also had to fight her coverage after receiving a denial for her therapy treatment she has been on for two years for lack of medical necessity as well as running into issues with artificial intelligence (AI) denying her insurance coverage at times.

Her RRMS has since developed into secondary progressive multiple sclerosis (SPMS), and had to take off five months of work last year. Her care team recommended for her to take more time off work, but due to the high cost of her health care as well as long-term disability not covering enough of her bills, she had to continue to work while simultaneously receiving expensive treatments for her SPMS. As Amber herself puts it, “Being sick is a full time job, working as a full time job, and navigating my insurance as a full time job.” 

“Being sick is a full time job, working as a full time job, and navigating my insurance as a full time job.”

Health Care Work Shaping Perspective

As a medical assistant for OB/GYNs for 26 years, she has treated patients who have had treatments denied by their insurance as well as patients unable to afford the exorbitant costs for their medications. Often working with pregnant moms, she implores her patients to get vaccinated for diseases like pertussis, which babies are the most vulnerable to. As she herself is immunocompromised, she encourages folks to talk to their care teams and get access to vaccines that provide them the protection they need.

Her career as a health care professional for over two decades has given her insight on both sides of navigating the health care landscape as both someone seeking care and providing care to patients. Amber understands the significance of her voice to provide both health care for her patients and advocate for more robust health care policy from legislators. 

Sharing Your Story Matters

Stories like Amber’s are critical to understanding how critical access to health care coverage is for real families. One powerful way to make your voice heard on health care is to raise your voice this election. Amber herself says of Trump’s budget bill that passed last summer (H.R.1), “HR. 1 is destroying everything…you can't get access to care, you can't get your care approved, [and] your care approval takes months.” As a health care professional, who has had many patients in her career on public assistance, the fact that these benefits have been stripped from those most in need of them is something Amber feels passionately about.  

Frequently Asked Questions

What did MomsRising member Amber share about her health care story?

Amber shares her experiences navigating the health care sector as someone diagnosed with relapsing-remitting multiple sclerosis and eventually secondary progressive multiple sclerosis that ties to her immunodeficiency, and advocacy for vaccines as well as reversing cuts to health care.

How has Amber’s experiences working in health care influenced her perspective?

As a medical assistant for OBGYNs, Amber understands both sides of navigating the health care system and has directly worked with patients who are impacted by attacks to health care.

Why is sharing stories like Amber’s important?

Sharing stories like Amber’s is key to understanding the attacks on health care by applying real stories to these attacks as well as making your voice heard this election. Sharing our collective experiences are critical to share for lawmakers to understand how health care policy decisions impact real families.