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.Read More
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.Read More
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).Read More
It means we did what we needed to do. Maybe not everything we hoped to do – losses in Florida and Texas smart pretty badly – but most. Everyone who voted should be proud of the effect they had on the election.Read More
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.Read More
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!
I’ve been planning a legislative update for a while. Little did I know just how bad June 2018 would be.
Before yesterday, I might have spent the whole post talking about the Trump administration’s new policy that allows insurance companies to offer plans that do not cover the 10 essential health benefits guaranteed by the Affordable Care Act. Of course, the ultimate target of the policy is to completely eliminate mandatory protections for those with pre-existing conditions, even though protecting that particular essential health benefit is “very important” to over 70% of Americans. Or perhaps the proposed cuts to the medical safety net – Medicare and Medicaid -- that would affect our most vulnerable, justified by a tax cut that was bad, but not that bad until you realize that they needed it to create a reason to gut Medicare and Medicaid.
I would have encouraged you to vote if you felt threatened by these policies. I would have given you a link to make sure you were registered (and to register if you weren’t), tell you where to go on election day, and how to vote early, as well as one to help you evaluate the candidates by their voting records.
And I would have steered clear of anything political beyond healthcare policy.
In good conscience, I can’t do that anymore. I will always encourage you to vote, but the Supreme Court has handed down three decisions in the last three weeks that will make that more difficult.
- Decision #1: Gerrymandering is a way to draw (or re-draw) Congressional districts in a way that discriminates against members of a specific race/ethnicity or political party. Racial gerrymandering has been illegal for a long time. Until recently, political gerrymandering was not egregious enough to require laws to prevent it. Now it is. A couple of weeks ago, The justices decided that they weren’t going to rule on whether partisan gerrymandering is unconstitutional. It’s hard, but not impossible, to measure, and it’s gotten to the point where it is demonstrably creating an unlevel playing field. This would have been the time to act. Solution: Get your state legislature to put gerrymandering on the ballot. Several states are proposing plans for the courts or bipartisan commissions to redraw the districts. Twenty-four states allow citizens to propose policy to the legislature or directly to their fellow voters.
- Decision #2: They upheld a decision to continue letting Ohio to purge voter rolls after missing one vote. Currently, if you miss a presidential or mid-term vote, the state will send you a notice informing you that you are about to be purged from the voter rolls. On paper. Through the mail. If you do not respond, you will be taken off the voter rolls after another four years. Do you know who actually checks the mail and reads random communiques from the state? No one under the age of 60. The Voter Registration Act says purging voter rolls for not voting is illegal. However, the majority (strictly along party lines) ruled that because the purge wasn’t aimed at a single individual, it didn’t violate the law. Do not let yourself believe that this behavior will be confined to Ohio. Solution: Nothing for the moment.
- Decision #3: They reversed a lower court decision that Texas districts were racially gerrymandered against Latinos. This decision was also made along party lines, and comes five years after they gutted the Voting Rights Act. Solution: Nothing for the moment.
All of these things put together with states closing polling places in minority neighborhoods, voter ID laws, and limiting polling hours and early voting options conspire to make voting by certain groups impossible. And who are these groups? Minorities, low-income earners, the elderly, and the disabled. All we ever wanted was a level playing field, and each of these things is another obstacle to overcome for the people who have the most to lose.
I am an optimist. I do not like being the doomsayer, but today it feels like there is no other choice. Today, Supreme Court Justice Anthony Kennedy, the only swing vote on the Court, announced that he will retire at the end of July. I can tell you right now that the Trump administration will nominate another Neal Gorsuch, who believes that racial gerrymandering is not illegal and has indicated through his judicial record that he does not believe in legal protections for the disabled. The Supreme Court protected the ACA only because the individual mandate was a tax. Now that the individual mandate is gone, so is the reason the Supreme Court protected it. What do you think will happen when the Trump administration brings another case saying that the Affordable Care Act is unconstitutional now that the individual mandate is gone. Nothing good, I assure you.
Supreme Court appointments are for life. Whoever comes in after Kennedy will be there for decades. The only way to stop it is to flip the Senate from red to blue – another very difficult but not impossible task. This means we have to protect Democratic Senators in Florida, Indiana, Missouri, North Dakota, and West Virginia, and flip two in Nevada, Arizona, or Tennessee.
I can tell you right now: this is the most important vote you will ever cast. If you have to miss an hour or two of wages you can hardly afford, or bring your kids to the polling place with you, or beg a ride to get to your polling place, PLEASE VOTE, especially if you live in one of the states I mentioned above. If you ever felt powerless in politics, now is your time. We have the power to protect ourselves, if only there are enough of us. I do not want to see our rights, so dearly won, steadily walked back for the next 30 years, and neither do you.
P.S. I do not consider the current administration to be conservatives. They are not the respected adversaries I have always known.
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.
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
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?
- We hate Congress, but love our Congresspeople. We love them just because they’re ours. Most of the time, we have no idea what they have voted for or against, or what kind of impact their actions have had. If we can’t look past the surface of our Congresspeople, we will remain stuck with ever-worsening gridlock until it breaks the system. For those of you who don’t think that’s such a bad thing, consider what will come to fill the vacuum. Time to start thinking about whether your representatives have done what you wanted them to do.
- The states. The state we live in controls how we vote, for both state and federal lawmakers. Many of these states have unfairly gerrymandered districts, discriminatory voter ID laws, selectively limited polling places, and several other ways to keep you from casting your ballot.
- We don’t show up. In the latest presidential election year, turnout was about 60%. The 2014 midterms didn’t even break 40%. Whether it’s apathy, time constraints, distrust of the system, or any one of a million other reasons, we just can’t make it, so we end up with something far from majority rule.
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:
- For voter registration deadlines by state: https://www.vote.org/voter-registration-deadlines/
- To make sure you are registered to vote in your state: https://www.headcount.org/verify-voter-registration/
- For our first-time-eligible voters: https://www.18by18.vote/
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.