There has been a lot of news lately about the efforts on many fronts – grassroots, federal and state lawmakers, and patient groups – to address astronomical drug prices. Although there are a lot of essential medications that need to be more affordable, the headliner drug for these efforts is insulin. Insulin is a “clean cause”. That is, you don’t “do something” to get the associated condition (Type 1 diabetes), it affects children, and people die without it. Also, since 1972, it has gone from $1.49 per vial (~$9 adjusted for inflation) to an average of about $300 per vial. Since they can’t afford it, many diabetics who need it are rationing – they are only taking as much as they can afford, as opposed to enough to keep them healthy. Eventually, if they don’t get what they need, they die.

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Actions Speak Louder Than Words

 I was going to do a political update this week, go over some of the proposals 2020 candidates have been putting forward, but today the Trump administration finally revealed their true intentions for healthcare. House Speaker Nancy Pelosi promptly countered with the announcement of a bill aimed at fixing loopholes in the ACA that are hurting Americans.

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What Is Activism?

I’m not an activist. Or I wasn’t. Too much of a commitment. Takes too much time. Too public. Too much baggage attached to that word. I just wasn’t interested. But the same change in perspective that helped me start sharing my experiences on this blog also caused me to start rethinking other positions I held. I was hesitant when the first activism opportunity came to me. I was already spending several hours a week on the blog in addition to my full time job and taking care of my conditions. But they – the Chronic Disease Coalition – were only asking an hour phone call a month, and I strongly agreed with their mission of supporting or opposing state legislation that affected patients. So, I dipped my toes in the water and became one of several patient Ambassadors who discuss their work and support each other’s efforts where we can.

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Where Do We Stand in 2019?

The short answer – on shaky ground. While having a two-party government instead of just one party in charge will slow what damage this administration can do to healthcare policy, it also means that unless there is some kind of revolt in the Republican party, very little will be passed on the Federal level. In the meantime, the administration can change things through the agencies (like cutting the advertising budget for Obamacare (a.k.a. the Affordable Care Act so fewer people will sign up) and the states will go their own ways.

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Lest We Forget

George H.W. Bush was nothing if not a flawed man and politician. As someone said this week, he would be the second to admit it, right after his wife. But he is also our most recent one-term president, in large part because he approved raising taxes when he said he wouldn’t – doing what was right for the country even knowing that it would end his political career. We have heard a lot about his accomplishments and failures this week as the country eulogizes and mourns him, but one thing I have not heard mentioned in any of the news coverage is the accomplishment that impacts me the most -- the passage of the Americans With Disabilities Act (ADA).

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This Is Us

We try to stick to the healthcare lane here at The Patient Advocate’s Chronicle, but it’s become abundantly clear in the last week or so that this election has become much bigger than one policy issue, or even entire policy platforms. Not that we were perfect before, but in the last, say, three years, we have become a place where it is ok to solve perceived problems with violence against anyone perceived as “other”: other than white, other than male, other than the “right” religion, other than from here.

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Paving the Road

We all know where good intentions can lead. I thought about that while reading about Seattle’s new ban on plastic straws.

Paving the Road.jpeg

There is a growing global wave of bans on single use plastic products—straws, stirs, utensils – that aren’t often recycled. Policymakers want to fix the awful issue of plastic in the oceans, but there are people with physical disabilities who use plastic straws to drink because they can’t lift a cup or if they don’t use a straw, they run a significant risk of choking to death.

At least in Seattle, there is an exception for people with medical conditions who require straws, but it is not well publicized and suggested alternatives are not viable. The most likely situation is that restaurants and other watering holes just stop carrying them. Most of us with conditions have to carry supplies – medication, equipment, etc. – with us, but we all forget. I have run out of insulin often at work because I didn’t know I didn’t have enough to get me through the day, and keeping a medication on premises that expires in a month doesn’t work that well. For something as vital as getting a drink, this ban adds significantly to the burden we already have.

Difficult as the straw ban will be, it pales in comparison to the possible impact of new policies intended to address the opioid addiction crisis. I am not going to speculate about the intentions of the manufacturers who lied about how addictive opioids are or the doctors who took money to prescribe. Hopefully they will be held to account like cigarette manufacturers were when we discovered they had done something similar.

No, the problem we need to address is what states perceive as a solution. Many are instituting measures that would limit providers’ ability to prescribe. On the surface, it sounds like a logical solution. But the unintended consequences could be severe.

  • Increased administrative burden: office and hospital administrative staff are already stretched thin because of the cost of doing business. This would stretch them even further.
  • Stigma and restrictions: it’s all very well and good to be wary of a class of drugs that has caused so much misery, but there are plenty of patients who have a legitimate need for strong painkillers to treat severe pain. If the patients who need the medications can’t get them, they will be reduced to a state of existence, as opposed to living a life. And terminal patients, for whom palliative care is vital for maintaining dignity and comfort – addiction is not really an issue if you have weeks or months to live-- will wait in misery for death to come.
  • An excuse for industry: insurers and pharmacy benefit managers (PBMs) hardly need another reason to delay or deny filling expensive prescriptions.

I have not heard a good solution to this one. Usually, I adhere to the theory behind our legal system (admittedly overly idealistic) called Blackstone’s Formulation, that it is better to let 10 guilty people go free than to imprison one innocent person. Translated for this situation, that would mean anything other than a solution that would punish the chronic pain sufferers for their conditions. I can’t make that work here since those addicted to opioids would be cast as the “guilty” ones. But they are victims, too, victims of a system that abdicated its purpose and its duty to put profits over patients.

So, what can we do? The only thing that comes to mind is increased patient engagement. We are headed in that direction, but slowly, too slowly to mitigate the negative effects of this latest slate of legislation.

I don’t think we as patients can wait for them to find us. At a few of the conferences I’ve attended, I’ve heard industry representatives speak about how difficult it is to find patients who want to be involved in research. This seems like an odd disconnect to me, as I am very aware of how vocal the online communities are. I bet nearly all of us, if given the opportunity to improve some part of the process/drug/system, would jump at the chance.

So, in the spirit of prevention and planning ahead, pick the entity (insurer, legislator, pharmaceutical company, etc.) you think is the biggest problem, and look up their public affairs office. Write or call or email or tweet with a message that if they ever decide to address X problem, you, as a user, would be happy to assist. Let’s see what happens!


Healthcare as a Civil Right.jpeg

I mention my mom a lot when talking about my chronic conditions, but my dad is just as much of an influence in my life. We were not always as close as we are now, but it was the first relationship I actively worked on as I transitioned from child to adult, and that is no small thing. I’m not sure I would have been able to do that successfully with my mom had she lived long enough for me to try.

We are a very politically aware family. My parents always took me and my brother with them when they voted. Current events were regular topics of discussion, and I am still unaware if there was any attempt to censor discussion for age-appropriateness. One of my clearest childhood memories is my maternal grandfather telling me to pay attention to the Iran Contra hearings in the summer of 1987. He said history was being made. I was 10. I didn’t want to watch PBS. I wanted to watch cartoons, but I sat down and paid enough attention to know it was boring.

We weren’t really what you would call activists, though, or so I thought. I knew my grandfather wrote a lot of letters to Barbara Mikulski, but that was pretty much it.

Then my parents and several others, led by my dad, sued our city and then the state over the elementary schools in my hometown, and I began to learn about civil rights. (I was a plaintiff!) The still fairly segregated elementary schools in African American neighborhoods weren’t getting the same money as the elementary schools in white neighborhoods. It took a long time, but they (we!) won, and each feeder area got an elementary magnet school, each with its own specialty (we were arts, and now there’s math and science, Spanish immersion, communications, and NASA Explorer).

You can’t really be involved in something like that without starting to ask questions. In conversations we still have, I learned that my paternal grandmother was active in the integration of all-white Baltimore neighborhoods in the 1950s, long before Congress enacted the Civil Rights Act.  

A decade later, on April 4-5, 1968, while my dad was a law student at George Washington University, he ferried residents home from jail while southeast Washington burned in response to the assassination of Martin Luther King, Jr. He had to have a special placard in the window of his car so he could get past checkpoints set up by police and military troops. It must have been scary, but the people he drove had every right to their fury (not the burning and looting part), and he wanted to help.

This is the environment I come from. This is the way my family did things. It is only natural that I continue the tradition in my own way, with my own civil rights issue -- that good health is a right and not a privilege.

So, remember to make sure you are registered, and then vote! In your primaries AND the general election in November. This is how we will change the world no matter what issue you’re most passionate about.

P.S. This is a surprise for my dad, so don’t tell him.