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World Hepatitis Day and Politics

Today is World Hepatitis Day. One of just four disease-specific global awareness days officially endorsed by the World Health Organization (WHO), WHD unites patient organizations, governments, medical professionals, civil society, industry and the general public to boost the global profile of viral hepatitis. On this day of observance and awareness, there will be a lot of information about hepatitis C (HCV) and other forms of hepatitis floating through cyberspace. There will be information about testing, prevention, and treatment.

But I want to talk about access to healthcare as it relates to hepatitis C.

Just yesterday, the Senate narrowly struck down a bill to repeal the Affordable Care Act. If there was a notion of replacement, it wasn't shared with anyone besides the people who were drafting the clandestine bill. The news has been rife with arguments, finger pointing, citation of the number of people who would suffer as a result of losing healthcare if the ACA were to be repealed. I'm currently under COBRA insurance. It expires on September 30, 2017. If the bill had been passed, I'm uncertain whether or not I would have been able to find an insurer to cover me and my cirrhotic, but fully functioning liver.

I was cured of HCV in May of 2016, but so many years of inflammation caused a lot of damage. My liver is cirrhotic. This is the reason early testing and treatment is so important. Today, a treatment naive patient can be cured of most any genotype of HCV in 8 to 12 weeks. By testing and treating as early as possible, liver damage like I sustained is fully preventable. Even though I'm cured, I am at a much higher risk for liver cancer. I am required to have surveillance diagnostics every 6 months. Typically it's an MRI or a CT scan, and sometimes they'll do an ultrasound. All of these are expensive. All are covered by my insurance requiring of me a small copay.

The day before the healthcare vote, I was scheduled for an MRI with gadolinium contrast. I am so grateful to have access to this kind of care, but I really hate it. Sliding into a 24 " round claustrophobic tube with the top of it far too close to my face, I close my eyes and pretend I'm floating in water. I dare not open my eyes. Doing so would awaken me from the oasis I've created just behind my eyelids. There's a butterfly needle in my right antecubital space, ready to receive an injection of gadolinium contrast at the very end of the approximate 35 minute procedure.

In the noisy but informative MRI machine at UCSF Parnassus

With the use of some calming visualization, I've learned to get through every exam I've ever had. But I HATE IT. I hate it because I know what they're looking for. It's a reminder that HCV still takes up too much room in my life. Even though the virus is gone, the damage it left behind can't be ignored.

On this particular day, the day before the Senate voted on whether or not they would repeal the ACA, as I lay in this magical tube, my hydrogen protons being magnetized, I wondered if this might be the last MRI I'd ever have the pleasure of having. I sent up a word of thanks for being in the right place at the right time and having health insurance that paid for the direct acting antiviral that killed the viral beast within me and has allowed me the most exquisite care by the most amazing healthcare team ever. And I thought about all the work that needs to be done to eradicate this virus.

This year's World Hepatitis Day theme is ELIMINATE HEPATITIS. Yesterday's outcome is a step in the right direction toward this goal. We can build on this momentum and accelerate progress towards achieving the goal of elimination by 2030.

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