My job at Healthier Colorado is more than a job to me.

I have a rare form of dwarfism called Russell Silver Syndrome (RSS). RSS is a cascading mosaic syndrome, which means that the initial mutation set off a cascade of mutations that affects many of my body systems. In addition to being short statured, my body processes and utilizes nutrients and calories differently, which means that any sickness or injury that affects my eating can very quickly turn into an emergency situation.  I have a wonky heart beat that has to be monitored on a regular basis and a cleft palate that affects my speech. I am what doctors love to refer to as “medically complex.” I’ve been ridiculously lucky to be in very good health for most of my adult life, but maintaining that level of health requires constant vigilance and the juggling of multiple specialists, doctor’s appointments, and an overwhelming maze of insurance rules and regulations.

My mom and I on my first birthday.

I’ve made the medical rounds and have practically seen it all, have spent hours on the phone with insurance companies, and have made decisions about where I work based on the health insurance that’s available. But six and a half years ago, my life changed drastically with the passage of the Affordable Care Act (ACA), which is sometimes referred to as Obamacare. My pre-existing condition no longer means that my insurance has to be tied to an employer and I don’t have to weigh needed treatment against my fear that I may hit my monetary cap on what my insurance plan will cover.

I am one of the millions of Americans who has benefited from the ACA and one of the millions who stands to lose if Congress and incoming President Trump succeed in repealing the ACA.

The ACA and I have had a long complicated relationship. I was on the front lines fighting for its passage by running a state level campaign advocating for health care reform, cheered with many of my fellow advocates the day it was signed into law, and worked to make sure it would be implemented in a way that would provide the most benefit to consumers. I was initially drawn to the health reform fight by the desire to ensure that no family ever has to go through what mine did while I was growing up. My parents are public school teachers and when I was born, they had good insurance, but that insurance had both annual and lifetime monetary caps on the amount of care they would cover. As is the case with many babies who are born with my syndrome, I was very fragile in the first few years of my life and required extensive hospital stays, treatments and surgeries. The year I was born, I spent the first several months of my life in the hospital and hit the insurance company’s monetary cap within three short months of life. When my parents walked out of the hospital with me, they were several hundred thousand dollars in debt. I spent my childhood watching my parents sacrifice and scrape to pay for the medical care I needed. I had a front row seat to the anguish that medical debt can cause, especially when the needed treatment is literally a matter of life and death. By the time I was a teenager, I vowed that I would do what I could to make the system better and ensure that no other family knows the feeling of having insurance coverage that doesn’t meet their needs and forces anyone to choose between crushing medical debt and needed care.

While the ACA is not perfect and there are opportunities for refinement and improvement, I have spent the last seven years watching it do an immense amount of good for a lot of people, including me.

Here are just a few of the important ways the law has improved both care and access to care:

• No more yearly caps and lifetime limits on care – Prior to the ACA, insurance companies were allowed to implement yearly and lifetime caps on the amount of care they would cover. Thanks to the ACA, they are no longer allowed to do this, which means that if you are in a bad accident or are diagnosed with a chronic or catastrophic illness, your insurance company will cover a portion of your care after you deductible is met.
• No more recission – Recission is the practice of insurance companies dropping their customers when they get sick. The ACA outlawed this kind of behavior, so you can be sure that your coverage will be there when you most need it.
• No more denials for pre-existing conditions – Millions of Americans have a pre-existing condition. Pre-existing conditions can be everything from a diagnosis of acne to something far more serious like cancer or chronic like diabetes or my rare syndrome. One of the major protections that the ACA offered was telling insurance companies that they can no longer deny coverage to someone who has a diagnosis that is considered a pre-existing condition.
• No more gender rating – Because of the ACA, insurance companies can no longer charge women higher premiums simply because of their gender.
• Limited age rating – The ACA limits the amount that insurance companies can vary premiums based on age alone.
• Allowing kids to stay on their parents insurance until they’re 26 – Young people are now allowed to stay on their parents’ insurance plans until they are 26, which has helped many young people maintain their coverage while they go to school and start their careers.
• Providing preventative services at no cost – The ACA requires insurance companies to provide preventative services like annual physicals and immunizations to you at no extra cost. Not only does this represent a cost savings for you, but it’s extra incentive to get care that could identify any health concerns before they become serious.
• Providing subsidies to those who qualify to help them purchase insurance – Colorado set up its own health exchange, Connect for Health Colorado, with help from the federal government. This exchange acts as a one-stop shop for those looking to buy a plan on the individual market. Not only does the exchange organize available plans in a way that makes it easy to compare plan features, deductibles and co-pays, individuals and families who financially qualified are given a subsidy to help you afford the plan the choose.
• Expanding Medicaid to adults without dependents – Because Colorado chose to expand Medicaid to 133% of the federal poverty level and include adults without dependents, many of Colorado’s working poor had access to health coverage and care for the first time in their lives. This expansion has helped cut down on uncompensated care and expand the availability of preventative care.
• Providing further protections for people with disabilities, LGBTQ identified people, and people whose first language isn’t English – regulations promulgated under a portion of the ACA add further protections for some under resources communities and ensure that they have the right to be treated equally by providers and are able to communicate in the way that is most comfortable for them.

The ACA is a huge law that covers many aspects of the health system, but these are a few of the provisions that have benefitted people the most. As Congress begins its quest to overhaul one of the biggest pieces of health legislation in the last century, I’m going to be writing these blogs on a regular basis. I’ll attempt to break down the reconciliation process, which is the procedure that Congress will most likely use to attempt to repeal large portions of the law; talk some more about Medicaid and why it matters to everyone in Colorado, not just those who are on it; and provide any breaking updates.

I firmly believe that everyone, regardless of who they are or their socio economic status, deserves to have access to quality, affordable health care. I got into health policy advocacy because I’ve spent my life navigating a health system that was not designed with consumers in mind. We can work to preserve some of the important gains that we have made under the ACA, but we can’t do it without you. In the coming weeks and months, we are going to ask you to take action. We’ll be asking you to call and write your members of Congress, to attend rallies and actions, and share your stories. The future of all of our care depends on us, so please commit to joining me in this fight. All of our health depends on it.