When the Patient Protection and Affordable Care Act (AKA Obamacare) was written, the plan was for Medicaid expansion to provide health insurance for people who made too little to qualify for a subsidy to purchase a plan, but too much to qualify for Medicaid under the rules of the past. The goal was to create a system in which no one would fall into a so-called “coverage gap,” and poor people would have access to care regardless of their income.

It worked – for states that adopted the expansion.

A little-known hiccup (ok, heart attack) is that the Supreme Court declared Medicaid expansion optional for states, rather than mandatory. As of January 2017, 32 states have opted in to the expansion (including DC) and 19 states have not. In states that have not opted to expand Medicaid (because of politics) the coverage gap has caused many people to be unable to access affordable insurance or care. This New York Times Magazine article explores the struggles of some of these people: Life in Obamacare’s Dead Zone. However, in states that have opted into the expansion healthcare premiums have risen less sharply and more people are insured.

Case in point: me. I live with a debilitating disease called Ankylosing Spondylitis. I need specialized treatments and medications to slow its progression and prolong my life. Because I’m disabled and cannot work, I am poor, so I am one of over 14 million Californians and over 74 million Americans who receive Medicaid. It is my only option for healthcare.

Now, Republicans are seeking to repeal and replace the Affordable Care Act completely. And they all seem to be on the same page about one aspect of replacing it: a shift to funding Medicaid with block grants. This would severely limit access to care for the poorest, most vulnerable people including well-educated, 30-year-old me.

With block grants, states receive a lump sum of money each year. This sum would not increase at the same rate as medical inflation (which rises faster than regular inflation) or with patient enrollment, but would remain stagnant no matter how many people need Medicaid services. Block grants would not even be introduced at the level of funding Medicaid now receives – they would be introduced at much less than that. Block grant funds aren’t tied to specific coverage types or programs either, so governors would choose where that money goes. A good governor may choose to help the most vulnerable. A not-so-good governor could further restrict care and funnel money away from the neediest patients.

And the worst part? Many proposals seek to choke off federal funding for Medicaid completely, forcing states to take the whole burden of the cost in future years. What would happen? States would be forced to stretch funds farther, reducing the quality, quantity, and availability of care to people who need it most. This could reduce federal spending in the short term, but would increase the burden of cost to the whole medical system as people get sicker, postpone necessary care they can’t afford, and wait until an illness is so serious it racks up thousands of dollars of bills after an emergency hospitalization.

While I currently receive an adequate level of care under the current Medicaid expansion in California, I still have to battle for necessary treatments to be covered. If anything, Medicaid needs more funding, not less.

The common assumption in America is that emergency rooms can be a safety net for people who do not have health insurance. They often have and do serve that purpose for people who have sudden, severe illnesses or accidents. But I need care that cannot be provided by emergency rooms, because they are not equipped to manage lifelong, chronic diseases that require individualized, specialized medications, treatments and regular monitoring. Medicaid expansion is the difference between managing my condition effectively and me becoming an untreatable repeat catastrophe in an emergency room. If I lose access to adequate care, my disease will progress, my care will cost more, and I will be more likely to be institutionalized (hint: that costs more) and face an unnecessarily shortened life expectancy.

And I am not alone. According to the Centers for Disease Control and Prevention, 117 million people in the USA have one or more chronic diseases.

My lifelong, degenerative, progressive, debilitating chronic disease isn’t – and shouldn’t become – an emergency. Ankylosing Spondylitis is a disease that can be managed with appropriate access to regular care.  Emergency rooms were designed for rapid, immediate access to life-saving treatment. Let’s keep them that way as much as possible. Please, don’t make my existence an ever-present, incurable emergency: fight for continued adequate Medicaid funding.

Call your Congressperson now and say no to block grant funding for Medicaid, and yes to continue the federally-matched Medicaid expansion. Find your representative here.

If you’d like to keep reading about Medicaid under the Affordable Care Act, here are some sources I found useful:

• Our Medi-Cal at Risk – a fact sheet from Health Access California about the impact an ACA repeal would have on the state’s Medicaid program
• Affordable Care Act – from Medicaid.gov, Major Medicaid and CHIP-related provisions of the ACA (at risk of termination under a repeal)
• How Many Could Lose Coverage in Your Congressional District? – an independently-curated, comprehensive set of spreadsheets detailing how many people could lose coverage with an ACA repeal
• The Coverage Gap: Uninsured Poor Adults in States that Do Not Expand Medicaid – from Kaiser Family Foundation: explanation, demographics of people in the coverage gap
• Affordable Care Act Medicaid Expansion – from National Conference of State Legislatures (NCSL), status of states expanding/not expanding Medicaid
• ACA left some gaps in care regarding chronically ill, but Medicaid expansion proved crucial – from Healthcare Finance, an article discussing research showing the importance of Medicaid expansion for people with long-term chronic diseases (though not perfect)