What Lawmakers try to Do to Your Healthcare While You're sleeping

The gears of American government are supposed to grind s l o w l y. Like molasses flowing uphill slowly. In winter. This is to protect us from emotional, knee-jerk policy, and to allow reasoned, public discussion and debate. Under our system, we the people know what a bill says before it passes, and we are given time to consider how it will impact us, our families, our neighbors, and our communities. It's also a good way to tell whether the people we elect are representing our priorities. No matter what they say, nothing shows a politician's agenda better than their voting record.

Our current Congress (the 115th), should know better, but, spurred on by an administration that doesn't understand how government works, it has repeatedly diverged from "regular order." Instead, lawmakers are attempting to rush things through state and Federal legislatures without giving us the opportunity to catch up. In fact, I suspect that it was Senator John McCain's (R-AZ) disgust with this lack of regular order that spared us from the outright repeal of the Affordable Care Act (ACA) last year, not necessarily any major objection to the bill's purpose.

After the failed ACA repeal, it was a relief to hold on to our rights as patients. Or did we?

A lot has been going on in Washington since then. Amidst news on Russia probes, Olympics, and horrific school shootings, our political leadership has been busy hoping you wouldn't notice a few little bills that slowly chip away at ACA protections as well as parts of the Americans with Disabilities Act, which has been around much longer.

Trump's tax bill already gutted the primary funding mechanism for the ACA. Here are some of the government’s 2018 efforts to both undermine and protect the ACA. For better or worse, each will have a profound effect on large sections of the chronic and autoimmune community:

  • HR 3976: The Access to Marketplace Insurance Act – Probably the most common way to change things is through Federal legislation. The majority passes bills with hidden clauses or new laws and the states have to follow that rule. In this case, the House has introduced a bill to correct a bad loophole in the ACA. It bars charities from helping patients pay for their insurance premiums. For some reason, in at least 42 states, they are interpreting a line in the ACA to mean that only the one specific charity named – the Ryan White Foundation – is allowed to help instead of using that as a precedent to say all charities can help. If you would like to help see this bill passed, contact (write, call, email, Tweet) your Representative in the House. Let them know that you feel strongly that this is a wrong that needs to be righted. It’s nice to write in support of a bill for once.
  • Step Therapy Bills – Another prime example of why we shouldn’t just let the states do what they want (see above). Though the states do good work in a lot of areas, most don’t in healthcare. Many states (14 with existing legislation and another 12 with legislation pending in 2017) allow insurance companies -- which often don’t employ doctors with expertise in your specific condition, and certainly don’t know the intricacies of your case -- to decide that they know better than a patient’s doctor. These states already allow or are trying to allow insurance companies to force patients to try less expensive treatments and fail before allowing access to the prescribed treatment. Some also allow extended prior authorization times. These practices can worsen a patient’s condition and, in extreme cases, cause irreparable harm. With these bills, we have to write our representatives on the state level. The bright side: state level legislators require fewer voter contacts to make an issue a priority and things happen a lot faster in statehouses. Oh, and both Florida and Oregon are doing the right thing, and have introduced state legislation to protect patients against these types of actions.
  • HR 620: The ADA Education and Reform Act – This one’s a doozy. And it has already passed the House. Basically, the bill makes it a lot harder for disabled people to get equal access to buildings. It introduces a process that would allow businesses to potentially wait years to make legally mandated Americans with Disabilities Act accommodations. It also seeks to promote mediation and other “alternative dispute resolution mechanisms” over lawsuits. This is not intended to help the disabled person. The best way to stop this bill is to make sure it doesn’t pass the Senate. So far the House bill has been received in the Senate, but hasn’t been assigned a number yet. Watch this space for updates, and in the meantime send your letters, emails, Tweets, or calls in the direction of both of the Senators for your state. You could even get your friends in other states to do the same.
  • Department of Health and Human Services (HHS) expands short-term insurance plans – Another way for the administration to take away patient rights is to alter the interpretation of some rules and regulations. In this case, they have expanded the period of allowed coverage for short-term insurance plans from three months to 364 days. These are meant to be stopgap measures if you decide to take time off between jobs or after 26-year-olds have to leave their parents’ plans. They often pay out less than half of what consumers pay in, and they are allowed to kick people off their coverage after major diagnoses, like cancer. There’s not a lot to do about policies enacted through the legislative branch except voting the President out of office (he and his appointees set agency agendas). You can always lodge a complaint with the agency, but executive branch employees have less at stake than legislative branch employees.
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Want to take action, but not sure who to contact? Find your Congressional and state representatives here or use this letter writing tool here

What Happens If They Don’t Do The Right Thing?

Last week, I wrote about some things a former employer did – or rather, didn’t do – that violated Reasonable Accommodation laws that protect people with medical conditions. Repercussions from such misbehavior can be far-reaching and harmful.

Upon starting a truly horrible project with a hostile work environment in a dangerous location, the first thing to go was my exercise regimen. I held on for about a month, losing sleep to exercise since I no longer had time with my 1.5 hour commute each way. I didn’t feel it much at first, but my blood sugars started to rise.

The next thing to go was my meal plan. I no longer had time to carefully plan meals and calculate nutritional information. At first, I used frozen and prepared meals to stay on track, but that became expensive and a nutritional challenge. There is no way to track what’s in prepared food  any more than there is to track what’s in restaurant food.

Those two things together slowly eroded my blood sugar control, but I was too tired to keep up with monitoring more and increasing my doses of insulin. After about six months, I began to gain weight. With the weight gain came increased insulin resistance, which called for greater and greater doses of insulin.

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I no longer understood my body’s relationship with my conditions.

Once I crossed that particular line, it became a game of tag. I chased after high blood sugars with high insulin doses, confused why I was so high. Or not since I wasn’t controlling my food intake. Every once in a while I would catch myself -- exercise a few times in a week, bring my blood sugars down for a few days – and gain 10 pounds in the process (which happens when an out-of-control diabetic brings themselves under control).

Twenty months of this rollercoaster can be damaging physically and mentally, but the impacts might not show up immediately. Here’s what has manifested in that short time: Since I have caught myself three or four times in my endless game of tag, I have gained 35 pounds, which means my damaged systems have to work much harder for basic functionality. The insulin I need every day has increased by over 100%. I have little spells of vertigo and nausea often enough to notice. I have had to quadruple my blood pressure medication. I have lost 25% of what kidney function I had. I hope that the lab results are temporary, maybe due to dehydration, but I don’t know.

As I struggle to gain the advantage over my own body, I reach for tools that might help: the latest technological advances in diabetes care, meditation, and journaling how I feel during the day. But these are external tools. I have to figure out how to fix the inside with inside tools.

I’ll be honest. I haven’t been this out-of-control for 20 years. It’s scary and depressing. But I keep coming back to the simple fact that this likely wouldn’t have happened if my former employer had followed the law.

But perhaps I can help you avoid my mistakes.

Take Action to Protect Yourself:

  • Speak up. Know that you are allowed to ask for what you need, and that your employer can’t share your medical information without your express permission.
  • Know your rights. Employers with more than 15 employees must comply with the Americans With Disabilities Act, which is where Reasonable Accommodations (RA) laws come from.
  • Call for help. The Equal Employment Opportunity Commission is the government agency that oversees RA violations. If you have made reasonable accommodations requests to an employer that refuses to act, you can call their hotline.
  • Consult an attorney. If you’re not sure whether you are have a case, call an employment attorney. Some offer a free initial consultation, but many will charge an hourly fee (No retainer should be required unless you hire the attorney to pursue a lawsuit.)

Are You Seeing The Forest or The Tree?

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I’ve wanted to talk about reasonable accommodation for a long time, but I had to leave my former employer before I felt comfortable doing that. It turns out not every employer takes the definition of “reasonable accommodation” to heart.

Reasonable accommodation says that, under the Americans with Disabilities Act of 1990, employers can’t discriminate against you because of a qualified medical condition. The definition of disability is opaque. Suffice it to say most, if not all of us in the chronic and autoimmune community are covered.

But what does being covered by reasonable accommodation actually mean?

The ADA says that if our conditions get in the way of us performing our duties, employers must make “reasonable accommodations” for us. This can include special office furniture, flexible schedules/telework, or even altering duties. For over a decade I had informal accommodation, mostly in the form of telework to make up for doctors’ appointments that would have eaten through all my vacation time. I am a contractor, so I made arrangements with my client and company staff on the project. No one seemed to care as long as I got my work done, which I did.

That changed in the summer of 2016. The details of the situation are for the next posts, but this situation turned out to be so detrimental to my health that my doctor wrote a note saying I could no longer be on that project. Nineteen months later, I still haven’t recovered.

My former employer’s failure to comply with reasonable accommodation laws caused more damage than I thought, and not just physically. One of the people responsible for the decision to keep me in the bad situation was someone I’d worked with closely for nearly a decade. I trusted him, which is not something I do easily or often.

When this colleague blocked my escape from the situation, it felt like betrayal, and man did that hurt. But instead of allowing myself to be sad and hurt, I did what they told me to and let righteous indignation sweep in to fill the vacuum where the hurt and sadness should have been. I built a bubble to protect myself from feeling what I didn’t want to. I was afraid that if I felt that, I would fall down a rabbit hole and not be able to climb out.

So, I built my bubble, and in doing so, I kept out all the good stuff, too: the excitement of a new job and good, impactful work; the satisfaction of maintaining this blog and connecting with some amazing people; and the support and plain old happiness I get from simply spending time in the company of people I love and trust. The mental effort it takes to maintain a protective bubble like that is massive. That’s the vicious circle I should have been looking at.

I have maintained my bubble since I started that awful project, and when my colleague, who was also my boss, couldn’t even be bothered to say, “Sorry to hear you’re leaving. Good luck in your new job,” a couple of months ago, it made it worse. After a decade there was not even an attempt at common decency, so I withdrew even more. Without the good to balance the bad, I felt more and more exhausted, making me less and less inclined to attend to my own health needs.

Now that I know what to look for, it will be easier to let go of my bubble, especially now that I don’t work for that company anymore. But that doesn’t mean it will be easy. I will have to allow myself to feel things I don’t want to feel and just be ok with it – my version of “leaning in.” That might take a while.

While I am not in a good place right now, I am not in a state of mind meriting a formal diagnosis, but obviously, my mental health has had a major effect on me physically, and it has derailed me for now. I believe it was actually dangerous for a while, with my diabetes out of control, and the resulting weight gain, which makes everything worse physically and metabolically. The one thing I did right, even during the worst of it, was go back to my therapist. I had been doing so well before that, I hadn’t needed treatment. But I needed it then. It felt like a lifeline.

Everyone has issues, sometimes more serious than other times. This is why it’s so important to have someone who can help -- a good therapist, access to a hotline (link to hotline listing), or someone who is trained to help you out of the more serious issues. I may have gone years trying to hold up my bubble, fighting with myself over what got my limited energy. Now it’s time to make improving my mental health a priority, and with it will come the energy I need to put myself back together physically. Or at least it will be a big step in the right direction.