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.

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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. 

Show Up

Every election is determined by the people who show up.

 – Larry J. Sabato, Founder and Director of the University of Virginia’s Center for Politics

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I have a confession to make. I love politics. The strategy, the motives, the players. It has always been a favorite challenge to take what a politician says and strip it to its fundamental message. If I can do that, I can see where we are headed. I am aware of what kind of weirdo that makes me. Good thing I live in a city where we are all that kind of weirdo.

It’s harder now. Everything changes fast, and the politicians I was sure of (on both sides of the aisle) are no longer who I thought they were. But our system is stronger than a few years of turmoil. The good news is that we can change things if we are unhappy with them. The bad news is how often we don’t.

I think we look toward Washington and all we see is hallowed halls of power, “the swamp.” We tend to forget that we are the ones who put them there. We are the ones who pay their salaries. We are the ones who can fire them.

If we’re so unhappy, why don’t we fire them?

Speaking only for myself, all I want is a level playing field. If the majority of voters in this country is on one side of an issue, that’s the policy we should have. A level playing field shouldn’t mean the majority of who shows up, it should be the majority of all of us. But our lawmakers know that we don’t have the time to pay close enough attention to hold them responsible when they vote against our interests. Some of them count on that.

How does this apply to healthcare?

One of the greatest gifts the Affordable Care Act (ACA, or Obamacare) has given us is a change in perspective. Despite it’s unpopularity when first enacted, in an incredibly short time (eight years), American collective consciousness has come to view good health not so much as the benefit of a good perk at work, but as a fundamental right. There’s a reason the Declaration of Independence lists “life” first among the unalienable rights.

Many of the lawmakers in office right now aren’t going to protect our right to healthcare. Having failed an outright repeal of the ACA, they have decimated its funding and plan to allow states to offer plans that gut the 10 essential health benefits that assure we won’t go bankrupt from our medical bills, among other things.

There is a solution.

To borrow a phrase, vote them out. If your Congressman or Senator is one of the ones not listening to the majority who want healthcare protected, fire them as you would any other employee who refuses to put your priorities first. Register. Get your family and friends to register. Explain to them that we can’t allow ourselves to be represented by people who can hear our stories and still refuse to do everything in their power to protect our right to live.

I am not saying that everyone has to jump wholeheartedly on the ACA bandwagon. It was never a perfect solution to a complicated problem. But it’s what we have, so it’s where we start (not with rescinding CHIP funding and funds to help with patient delivery systems).

Primary season for the 2018 midterms has started. If you would like to register to vote, or help others register to vote, the following can help:

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

Is this the Zombie (Bill) Apocalypse?

Whiplash much? I don’t know how you feel, but the latest in healthcare policy news makes me feel like I’ve just been hit by a boomerang someone threw in July – lulled into relief when the “skinny repeal” died, then slapped upside the head with the current last ditch effort at passing an Obamacare repeal while they still have a chance to squeeze it by with 50 votes.


Meet the zombie. This back from the dead bill is a last ditch attempt to repeal Obamacare, or the Affordable Care Act, before the Senate loses its ability to pass it with only 50 votes. It is not bipartisan, and it goes even farther than the one that Senators Lisa Murkowski, Susan Collins, and John McCain killed this summer

It’s a punt. Federal lawmakers would cede their responsibilities to the states by transforming funding into limited block grants. The block grants would be distributed evenly to the states (those that expanded Medicaid under Obamacare would lose millions of dollars). Basically, that means that the Federal government gives each state a limited amount of money every year to use for healthcare, but with few, if any, guidelines on how it should be spent.

There would be no individual or employer mandate to support coverage. There would be no subsidies, and while insurance would not be able to charge people with pre-existing conditions more, there are easy outs on the type of comprehensive coverage necessary for chronic patients to survive

Funding would be cut by a third by 2026. In less than 10 years, the individual markets would virtually disappear due tounaffordable plans and potentially tens of millions of people would lose coverage through that and capped Medicare spending. Each state would determine its own Essential Health Benefits, so required coverage would narrow, if there was any at all.

What makes this round even worse than the summer is that stalwarts Collins and Murkowski have been unexpectedly quiet. Without last time’s bribe of a vote on full, immediate repeal, Senator Rand Paul has been tweeting his objections, but he has not said outright that he will vote against. John McCain, who hammered home the nail in the last bill’s coffin with a dramatically gladiatorial thumbs down? Though nothing he objected to has changed – lack of proper Congressional procedure through Committee hearings, public debate, etc. – he is close to co-sponsor Lindsay Graham, and has not come out against the bill, either.


But Cassidy-Graham isn’t the only bill on the block right now, though the others don’t have the same amount of backing.

Medicare for All

Sounds great, right? The idea of universal coverage is growing in popularity. But, while all single payer is universal healthcare, not all universal healthcare is single payer. Universal health insurance generally means broad coverage for everyone, no matter income, medical condition(s), or ability to pay. Single payer is a form of universal coverage paid by one party, in this case, the Federal government.

It would be so easy to let just one source take care of everything. And in just four years! However, the universal coverage offered by most developed nations is not single payer, but a hybrid of public and private coverage. Canada, whose system is closest to what Senator Sanders proposes, uses a private insurance market for services not covered by the government. And the Canadian government does not cover nearly what the Sanders bill proposes. (Medicare for all includes vision and dental care, which Medicare does not cover.)

Add to that the lack of a score from the nonpartisan Congressional Budget Office, which determines cost and loss of coverage impacts, lack of anything resembling a plan to pay for the coverage, and what would happen to our economy if the health insurance industry collapsed (which it would without a phase-out period longer than four years) and this bill is going nowhere.

It’s a good thought and an important introduction, but it also looks to be the next litmus test for what defines a “true” Democrat. I sure hope not. As the President’s approval numbers increase for the third week in a row, the last thing Democrats need is to shrink the tent. I hope we reach a  universal healthcare solution, and soon, but this bill is not the way.


This one makes me sad. This was a good faith, bipartisan effort to stabilize the 2018 markets. Details of the plan are sparse – negotiations of a bipartisan healthcare bill are bound to be sensitive – but the intent was very basic. Republicans would get more flexibility for the states to offer other options under the 1332 waiver. Democrats would get guaranteed funding for subsidies that help low income individuals pay for their coverage (the President keeps threatening to not release it).

Senator Alexander announced Tuesday that negotiations had stopped because they just couldn’t find the support to bring it to the Senate floor. I believe this is because of the Cassidy-Graham bill in part, so there is a chance it could be resurrected after September 30th, but I don’t know how likely that is. 

What can you do about the zombie?

The clock runs out at midnight on September 30th. As Jon Favreau said in his latest podcast, “It’s scary again and everyone’s gotta get to the phones.” Again. Sorry, guys.

Vote Smart

Indivisible Guide

A Dirty Game Is Still A Game: Behind the New Senate Healthcare Bill

I’m speaking of the power game, of course: politics.

There’s a lot going on right now on Capitol Hill. The House has passed a terrible bill that, if enacted, will leave a whole lot of us out in the cold, unable to pay for the care we need to survive, going back to emergency room treatment for everything, making hard choices between food and our meds. The Senate – supposed to be the more reasonable chamber – has presented a version that is even worse. Medicaid would be cut more slowly, but cuts would be deeper. It would be easier for states to get waivers to opt out of the essential health benefits. And the governors would be able to apply for waivers without the consent of their legislatures. It’s scary and stressful.

But there is a difference between government and politics. Government is that set of terrible bills, which have support from no state. Politics is what might save us. I truly believe that the majority of politicians pursue office because they think they can make their constituents’ lives better. In order to do that, they need to stay in office. Therein lies the rub.

Keep in mind that the man behind the bill, Senate Majority Leader Mitch McConnell, is a master strategist. He shrouded the bill in secrecy and kept its substance even from the panel he appointed to write it until the last minute. By keeping the text under wraps, he stunted discussion in favor of rife rumor, and kept us from a deeper understanding of the bill by disallowing public debate. He wants to adhere to a very short timeframe – eight days from unveiling to vote -- barely enough time to digest the independent analysis produced by the nonpartisan Congressional Budget Office. McConnell can only afford to lose three votes. Two to make it a 50-50 split, and one to put it past intervention by tie breaker Vice President Mike Pence. (No Democrat will cross the aisle to vote for this bill.) If people don’t understand what’s in the bill, they are less likely to lodge complaints with their Senators.  

On one side of the Republican opposition, you have the ultra conservatives. Four have publicly opposed the bill on the grounds that the it is not conservative enough: Ted Cruz of Texas, Rand Paul of Kentucky, Mike Lee of Utah, and Ron Johnson of Wisconsin. Don’t count on these folks to stand on this. Political posturing is important to shore up your base, but these are safe states, and in the end, the bill is a big step toward their ultimate goal of killing government funding for basically everything.

On the other end of the opposition, there are the Senators for whom it would not be politically expedient to vote for this bill. Dean Heller of Nevada has already said he won’t vote for the bill as it is because he knows how many of his constituents would be negatively affected. There are others. Shelley Moore Capito of West Virginia, Lisa Murkowski of Alaska, Susan Collins of Maine, Jeff Flake of Arizona, Rob Portman of Ohio, Ben Sasse of Nebraska, Andy Gardner of Colorado, and Bill Cassidy of Louisiana. Some of these states would lose too much if Medicaid was cut as deeply as the bill proposes. Some of them are facing such severe conditions in the opioid crisis that their constituents literally won’t survive without the federal funding provided by existing law. Whatever the reason, these are the Senators most open to persuasion by their constituents. That’s not to say that there won’t be certain concessions made for those specific states during negotiations, but we are not there yet, and there is little time for that on McConnell’s timeframe.

Possible not-worst-case-scenarios:

  • Certain states will pick up the funding slack if the Federal government drops the ball. The ones with the budgets to will keep as many of the exchanges open as possible, especially the states that built their own, as opposed to relying on the Federal marketplace. Budgets may be limited, but a lot can be accomplished through state regulation. Regulations are only limited by the chambers who write them. And state government usually moves much faster than Federal.
  • And the big one: all of this might be political posturing. McConnell knows very well how difficult this bill will be to pass. But at least if he puts it up for a vote by Friday, most Republicans can go home and say that, after seven years of talking about little else, they voted to repeal Obamacare. The Senators who opposed will be cast as the villains (“We tried – it’s their fault the bill didn’t pass.”), or more likely heroes to the majority of constituents who are against the bill

The bottom line is, hope for the best, but prepare for the worst. Our community is good at that, as we have all had to sit in doctors’ offices waiting on test results. Now is the time to call. Crash their switchboards (Washington, DC and state offices). Overload staff with civil protests and requests to oppose the bill. And if you don’t live in one of the states listed above, call/text/email a friend who does and ask them to call. This is the power that you have, and exercising it can help relieve that knot that seems to rest permanently in the pit of your stomach.

NOTE: The Senate has already added provisions to their bill to encourage healthy people to sign up for insurance by instituting a penalty for allowing coverage to lapse. The original bill didn’t have that. And the Congressional Budget Office has released its report, which says that 22 million fewer people will be insured (15 million from loss of Medicaid coverage). The deficit will also decrease by $321 billion over 10 years (mainly by not insuring 22 million people).

Senator Contact Pages                                 

Shelley Moore Capito (WV)                                                                                                            

Lisa Murkowski (AK)              

Susan Collins (ME)

Jeff Flake (AZ)                                         

Rob Portman (OH)                                

Ben Sasse (NE)

Cory Gardner (CO)                                               

Bill Cassidy (LA)