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How the Current Health Care Debate Affects Me as Someone With Preexisting Conditions


Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

I’ve been in a brain freeze for the past few days. The recent passing of the AHCA (American Health Care Act) in the House and the Senate’s Better Care Reconciliation Act of 2017 (BCRA) have left me reeling for many reasons. When I expressed concerns, a friend asked why I was worried because I don’t use Obamacare (also known as the Affordable Care Act or ACA) as my insurance. It made me realize that people have no idea what insurance is and how it works. We all think we know how it works, but honestly, the hows and whys are never really looked at in depth unless you need it.

I unfortunately need to use my insurance a lot. I will be one of the people placed into the high-risk pools according to the AHCA. The BCRA (in the version released on June 22, 2017) amended this by stating that states cannot pass laws allowing health insurance companies to deny coverage to applicants, including those with preexisting health issues; however, it allows states to offer scaled down insurance plans. This means that insurers are not required to offer “essential health benefits” (EHB) which were put in place by ACA.  There are 10 EHBs:

1. Ambulatory patient services (outpatient care you get without being admitted to a hospital)

2. Emergency services

3. Hospitalization (like surgery and overnight stays)

4. Pregnancy, maternity and newborn care (both before and after birth)

5. Mental health and substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy)

6. Prescription drugs

7. Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities, or chronic conditions gain or recover mental and physical skills)

8. Laboratory services

9. Preventive and wellness services, including counseling, screenings and vaccines to keep you healthy, and chronic disease management

10. Pediatric services, including oral and vision care (but adult dental and vision coverage aren’t essential health benefits)

With these benefits eliminated, an insurance company could impose annual caps or a lifetime coverage cap for people who need or want those benefits. Again, I do not currently use the ACA, but the ACA did impact my personal insurance by not allowing a cap on coverage. The AHCA and BCRA allow insurance companies (and yes, that means private insurance, too!) to cap people’s insurance.

What does capping insurance mean? Well, say I have a $1,000,000 coverage limit for my lifetime (there could also be yearly caps). Once I meet that limit, I would lose my insurance and have to pay out-of-pocket for everything from that point on. Now, some people wouldn’t worry about reaching that limit, but my current drug is $18,000 per month (in addition to all of my other medication). That drug alone costs my insurance $216,000 a year. I will surpass that million-dollar coverage limit in less than five years with a lifetime cap. I firmly believe this drug is the only reason I am still able to walk and use my hands functionally. I need it to live. I need it to work.

As for high-risk pools, it seems the BCRA will not include those, but they will allow states to offer these pared down insurance plans that do not cover essential health benefits. What does that mean? Well, it means that people who want or need to have those EHBs in their insurance will have to pay more for more coverage. Essentially, people with pre-existing conditions will have out-of-pocket costs rise significantly. How much? No one knows exactly.

I live with and manage thyroid disease, DSAP (skin disease), fibromyalgia, spondyloarthropathy and high blood pressure. I am not being a drama queen when I say I am petrified. The amount of coverage I require just to function may be more than I can actually afford. Let’s also not forget that no one can predict that they will remain healthy or free from accident/injury throughout their lifetime. Someone may opt for an insurance plan without EHBs and then years later require rehabilitative medicine following a car accident or stroke. How will they afford for expensive therapies if their insurance doesn’t cover it?

I also think about how many people across this country have preexisting conditions. The threat of higher deductibles and higher prices for coverage causes me to have higher anxiety all the way around. The scariest thing for me is not just the ramifications of this bill passing through the Senate, but that people in my government and country feel it is OK to cause millions of Americans to lose affordable insurance. To classify those with preexisting conditions as if we are simply drains on the healthcare system instead of equals to other tax-paying citizens.

I know I am lucky to have insurance. I know my costs are higher than many others in my insurance pool. Should I feel guilty? Should I be grateful and never complain? I know many of my fellow Americans don’t want to pay taxes for insurance that includes someone like me. I have no issue with doing so. I’m happy to pay extra money so my fellow citizens have the medical care they need when they need it. That is what insurance is after all. You pay for coverage you may never use, but when you get sick, it’s there.

People don’t seem to understand how important it is to have insurance coverage. Some politicians have made outlandish statements that indicate to me they have no idea what it is like to live with chronic or acute illness. For example: Rep. Raul Labrador (R-Idaho) stated in a town hall, “Nobody dies because they don’t have access to health care.” Um, what? Go ahead and re-read that sentence again. I don’t have statistics on it, but I’m willing to bet that many people in the U.S. die each year because they don’t have health care.

In addition to penalizing sick people, there will also be an age tax. It could raise the premiums for older adults to be five times what younger adults are charged. This is all related to insurers being able to charge you more and exclude coverage for preexisting conditions (for up to 18 months) if you have a lapse in health care coverage for more than 63 days. So imagine, you lose your job to layoffs or downsizing and can’t afford to keep up insurance while you job search. You get it back once you get a new job that may or may not pay you less than what you made before, but now you might have to pay more for health insurance? I guess being unlucky is also a preexisting condition.

Now in saying all of this, I will admit, the ACA (Obamacare) needed a lot of work, but I think it was the first move in the right direction. I feel like politicians are so polarized by their party that they refuse to work together…and Americans are paying the price, especially those with preexisting conditions.

Just this week, it was announced that plans to vote on the BCRA will be procedural only. Republicans do not have enough votes to push the bill through and Democrats and some of the GOP are not on board. The President tweeted, “Republicans should just REPEAL failing ObamaCare now & work on a new Healthcare Plan that will start from a clean slate. Dems will join in!”  

Wow. The leader of our country wants the current law repealed so we can have a “clean slate.” How convenient! If only patients could get a clean slate. Make our diseases go away until we are ready to finally handle it! What a fabulous idea! I can see it now: cancer patients, autoimmune patients and differently abled patients all putting their treatments on hold until Washington D.C. politicians can figure stuff out. That sounds logical! I propose this instead: Patients under ObamaCare go about getting their treatments and not pay anything until our political leaders figure things out! How is that for a clean slate?

Whatever side of the aisle you land on, it’s time to take a stand. It’s time to make the healthcare industry and Washington D.C. catch up to the needs of Americans with and without preexisting conditions. It’s time that patients across the country let their voices be heard.  

Call, text, write, email and visit with your elected officials. Resistbot is one way to turn your texts into faxes that reach officials. Common Cause helps you figure out who your elected officials are. It will take only a few minutes a day to let your voice be heard. If you want affordable healthcare, it’s time to speak up! When President Trump said, “Nobody knew that healthcare could be so complicated,” I responded, “I did!”

Being silent is no longer an option. I preexist; therefore, I am ready to fight for affordable healthcare!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via flySnow.

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