April News

DavidBartonSmith.jpgTickets are selling fast for the Maryland PNHP Annual Dinner - register now!

We invite you to join us for the annual dinner for the Maryland chapter of Physicians for a National Health Program on Tuesday, April 24 2018 from 6-9 p.m. in support of Healthcare is a Human Right Maryland.

To purchase your ticket for the dinner on Tuesday, April 24 at the Turn House in Columbia, click here.

Our special guest for the evening will be David Barton Smith, author of The Power to Heal: Civil Rights, Medicare, and the Struggle to Transform America's Health Care System. He will be presenting on the topic of race relations in the U.S. health care system.

David Barton Smith is Emeritus Professor at Temple University and Adjunct Professor in the Department of Health Policy and Management in the Dornsife School of Public Health at Drexel University. He is the author of seven books, more than forty journal articles, and numerous research projects. He was awarded a 1995 Robert Wood Johnson Health Policy Research Investigator Award for research on the history and legacy of the racial segregation of health care and continues to lecture widely on this topic. His most recent book, The Power to Heal: Civil Rights, Medicare and the Struggle to Transform America’s Health System (Vanderbilt Press 2016 in press) received the Goldberg Prize for the best book in the area of medicine this year. Prof. Smith is also assisting in the development of a companion documentary supported by the National Endowment for Humanities, produced by Barbara Berney. Currently in the editing process, it will air on PBS stations later this year.

 

This Month in the Fight for National Improved Medicare for All (NIMA)

Image: A CVS advertises bottled water during the Elk River chemical spill that poisoned the drinking water of 300,000 West Virginians

We Have Much to Learn from the West Virginia Teacher's Strike

Brittany Shannahan
Statewide Organizer
HCHR-MD

The West Virginia Teacher's Strike inspired a number of articles from single payer advocates inside and outside the state. Writing for JacobinCathy Kunkel said:

"The underfunding of public employee health insurance is not a problem unique to West Virginia. Labor militancy around this issue could ultimately pave the way for a national Medicare-for-All solution. West Virginia teachers and service personnel have not focused on federal policy yet, but the PEIA issue will not be going away as long as medical and drug costs continue to skyrocket."

The surprise victory of the teacher's strike against a Trump-like governor shows us that we have more to learn from our sister state than the other way around. As an organizer, I have a long history with social movements in West Virginia. In 2011, I wrote my Master's dissertation on the strength of a decades-old environmental movement in remapping Appalachian labor history and identity. The 2014 Elk River chemical spill that contaminated the drinking water of 300,000 people brought the struggles that rural West Virginians had faced for decades to white-collar families in Charleston. Continue reading on our Campaign Blog

Remembering Dr. Richard Humphrey, 1934-2018

We are sorry to share the news that Dick Humphrey passed away last week. A passionate and dedicated Oncologist and Associate Professor at Johns Hopkins Hospital for 56 years, Dick was a lifelong campaigner for human rights. A true citizen doctor, his activism spanned from issues including racial justice, gun control, worker's rights, environmental justice, and nuclear disarmament. He also played a foundational role in the development of the Healthcare is a Human Right Maryland campaign. 

There will be a private burial and a memorial service will be held later this spring at the First Unitarian Church of Baltimore. We will be sharing the details on our calendar and our Facebook page.

 

Healthcare is a Human Right Maryland featured on AJ+

AJ+ interviewed Dr. Eric Naumburg and Brittany Shannahan about the prospects of universal healthcare in Maryland.

Watch the video here.

Read more about House Bill HR-676, the Expanded and Improved Medicare for All Act, here and the prospects for universal healthcare in Maryland here.



Other key moments in March:

March 7
HR-676, the Expanded and Improved Medicare for All Act, has more cosponsors than ever! After signing on in January 2017, Rep. Keith Ellison (D-MN) announced that he would be taking on the role of lead cosponsor following the retirement of Rep. John Conyers (D-MI):

“The United States is the outlier among large industrial countries. Everybody else has decided that healthcare is a right and they’re working to make sure that it is. We as a nation need to move in that direction for the welfare of our people.”

March 9
Healthcare is a Human Right and the Baltimore Harm Reduction Coalition participated in a packed town hall event on the Opiates crisis in Easton, hosted by Talbot Rising. It was a lively evening discussion about racial justice, access to care in rural areas, overcoming stigma and the urgency of a universal (i.e., single payer) healthcare system in providing treatment. 

March 21
National Nurses United is teaming up with nurses at Johns Hopkins Hospital to hold a ballot on whether to form a union. With Chase Brexton staff having formally unionized last month, nurses and staff at other hospitals in the state are likely to follow suit. 

March 24
It is time for Americans to move away from celebrating our ability to harm one another through wars and weapons and towards caring for one another. With this in mind, Healthcare is a Human Right Maryland members from across the state participated in the March for Our Lives in Washington, D.C. We stand in solidarity with all people resisting gun violence, from the streets of Baltimore to Parkland survivors. 

March 29

David Shulkin, the former secretary of the Department of Veteran's Affairs writes an op-ed for the New York Times, alleging that he was fired by Donald Trump for refusing to implement an agenda of privatization:

"They saw me as an obstacle to privatization who had to be removed. That is because I am convinced that privatization is a political issue aimed at rewarding select people and companies with profits, even if it undermines care for veterans."

 

April Events

Saturday, April 7 – Tuesday, April 10, Washington, DC
Health over Profit for Everyone Action Camp
First Trinity Lutheran Church
309 E St NW, Washington DC 20001

Health Over Profit for Everyone, in partnership with the Backbone Campaign, is offering the first Single Payer Action Camp to build participant’s skills in strategy, messaging and direct action to win National Improved Medicare for All. The camp will include workshops in tools for developing strategic campaigns, how to make your message visible, creating media, nonviolent direct action and more. We will put those skills to use on Monday and Tuesday through actions in Washington, DC on the Monday and Tuesday.

Visit http://healthoverprofit.org/spring-2018-single-payer-action-camp/ for more details and to register. You must register to participate. Lodging is limited - reserve your space when you register.


Monday, April 9, Washington, DC
March for National Improved Medicare for All
Washington, DC Area (location TBC)

Health Over Profit for Everyone is holding the first National Improved Medicare for All Action Camp in Washington, DC from April 7 to 10. You can learn more about the camp hereWhether or not you can participate in the camp, you are invited to the community march for National Improved Medicare for All on Monday, April 9 in downtown Washington, DC. We will gather at noon.

More details will be released as we get closer to the date, but we can say that it will be a fun, festive and child-friendly march.

Tuesday, April 10, Columbia 
Howard County Chapter Meeting
7:30 PM, Home of Dr. Eric Naumburg
6163 Devon Drive, Columbia, MD 21044

RSVP

Thursday, April 12, 7pm-9pm
Carroll County Chapter Meeting
Carroll County Public Library
50 E Main St
Westminster, MD 21157

For more information, contact brittany@hchrmd.org or call 410-310-4589.

Tuesday, April 24, 6pm-9pm
Maryland PNHP Annual Dinner
The Turn House
11130 Willow Bottom Drive
Columbia, MD 21044

We invite you to join us for the annual dinner for the Maryland chapter of Physicians for a National Health Program on Tuesday, April 24 2018 from 6-9 p.m. in support of Healthcare is a Human Right Maryland.

To purchase your ticket for the dinner on Tuesday, April 24 at the Turn House in Columbia, click here.

 

Thursday, April 26, Baltimore 
Baltimore City Chapter Meeting
7:00 PM, Episcopal Diocese Center
4 E University Parkway, Baltimore, MD 21218

Members, friends, newcomers all welcome. Free ample parking (enter from N. Charles St.). (Come early for snacks/social time at 7:00 PM!). For more info, email info@mdsinglepayer.org.

RSVP   

 

Get Involved!

Baltimore Healthcare Students and Professionals for Single Payer
Our first happy hour was a massive success! BHSPSP aims to bring together people who study and work in healthcare fields from across different disciplines to meet one another and plug into the movement for human rights in healthcare. In the near future, we will be hosting more happy hours as well as lectures and other special events. For more information, join our Facebook group or contact Brittany@hchrmd.org.

Media training – share your story!
We occasionally are approached by news outlets looking for people to interview about their experiences in struggling with healthcare in the US. Is that you? Please get in touch! Brittany@hchrmd.org

Donate to HCHR-MD!
Healthcare is a Human Right Maryland relies on your donations to support our work. All contributions are tax-deductible and you can make a one-time donation or sign up as a monthly sustainer by clicking here. We accept credit cards and check payments.

Contact your Representative about HR-676, National Improved Medicare for All! 
Steny Hoyer, Andy Harris, John Delaney and Dutch Ruppersberger have not signed on to HR-676. Click here to locate your congressperson and to send them a message that it's time for them to become a champion for Medicare for All!

Business for Single Payer Campaign 
Single Payer works for business! If you are a business owner and would like to talk to us about how National Improved Medicare for All can save you money, or if you'd like to join us in reaching out to gain business support for our campaign, contact sdunbar91@gmail.com


We have much to learn from the West Virginia Teacher's Strike

The West Virginia Teacher's Strike inspired a number of articles from single payer advocates inside and outside the state. Writing for JacobinCathy Kunkel said:

"The underfunding of public employee health insurance is not a problem unique to West Virginia. Labor militancy around this issue could ultimately pave the way for a national Medicare-for-All solution. West Virginia teachers and service personnel have not focused on federal policy yet, but the PEIA issue will not be going away as long as medical and drug costs continue to skyrocket."

The surprise victory of the teacher's strike against a Trump-like governor shows us that we have more to learn from our sister state than the other way around. As an organizer, I have a long history with social movements in West Virginia. In 2011, I wrote my Master's dissertation on the strength of a decades-old environmental movement in remapping Appalachian labor history and identity. The 2014 Elk River chemical spill that contaminated the drinking water of 300,000 people brought the struggles that rural West Virginians had faced for decades to white-collar families in Charleston.

If I were to identify a single defining moment, though, it would be November 9, 2016, when West Virginians woke up to Donald Trump as US president and Jim Justice as governor at the same time. Justice, a coal baron, came into office with the agenda of slashing the social safety net in order to drive West Virginians further into dependency on the coal industry for jobs and economic development. With diverging groups that haven't always gotten along finding a common enemy in the new administration, resistance at a grand and unprecedented scale was inevitable.

As one of the states most positively affected by the Medicaid expansion under Obamacare, West Virginia has seen growth in the number of citizens demanding Medicare for All. When Bernie Sanders held a town hall in McDowell County, WV, it was one of the most unifying issues that emerged from the discussion. But outsiders looking to Charleston for inspiration or for political allies in the movement to secure single payer should note that the teachers' victory there was built on decades of long-term organizing in a state very different from ours.

First of all, while Maryland can count on a generally progressive state government to pass laws during Republican presidential administrations, these movements in West Virginia were created in a political environment where short-term change was just as improbable as long-term change. Direct action campaigns by groups like Mountain Justice and RAMPS peaked during the Obama years. These movements were loud, disobedient, and thoroughly radical in articulating their vision for Appalachia's future. West Virginia's teachers refused to compromise on a bad deal with the state government precisely because "no compromise" as a tactic has a long and stubborn history in that state. Activists in deep blue states are accustomed to compromising on our values in return for short-term policy gains at the legislative level. At a time when the financing of our healthcare system requires a complete overhaul, "no compromise" is a tactic we should learn to get used to.

Secondly, Maryland's robust economy and status as one of the richest states in the nation comes in part from the historic supply of cheap coal to our factories and steel mills, while West Virginia remains one of the poorest thanks to the legacy of extraction. It is easy to overstate the likelihood of West Virginians joining this movement in large numbers until activists in more prosperous states make a strong effort to show solidarity with Appalachian struggles. At the moment, most union campaigns for universal healthcare are focused on state-level legislation in richer states. There are already serious doubts to whether a universal healthcare system is possible in Maryland at the state level.

State-level universal healthcare would be impossible to finance in poor states. West Virginians know this and look at activists in rich states with suspicion. The last time outsiders showed up telling mountaineers how to improve their liveswas the War on Poverty in 1967, a legacy that stings to this day. The best way to bring Appalachians into this movement is to articulate a national insurance program that covers all of us - and to show up more when we're asked to. Healthcare isn't just a right for West Virginians: it's a debt that more developed parts of the nation owe in return for over a century's worth of immiseration and plundered natural wealth.


Medicare Advantage vs. Medicare for All

medicare-advantage-780x290-2.jpg


A new twitter campaign led by The Coalition for Medicare Choices promises to mobilize two million seniors to “preserve and strengthen” Medicare Advantage. But who is the Coalition for Medicare Choices? With Medicare Advantage now covering 33% of Medicare enrollees, what does the state of Medicare Advantage plans mean for the fight for National Improved Medicare for All?

Medicare Advantage, also known as Medicare Part C, allows elderly and disabled Americans to choose between “traditional” Medicare (fee-for-service) and private healthcare HMO plans. The initial idea behind Medicare Advantage was based on a belief that allowing private sector HMOs to have a slice of the Medicare pie would offer better consumer choices and reduce prices. A more cynical explanation would categorize Medicare Advantage as the privatization of an essential government service, with the primary aim of producing large profits for the corporations involved.

Over the last few decades, insurers participating in Medicare Advantage have schmoozed Congress into compensating them with more money per person than is allocated to traditional Medicare. Don McCanne of Physicians for a National Health Program writes: 

“Each year the administration, whether Democratic or Republican, uses quirky arcane rules to ensure an adequate revenue buffer so that private insurers can compete favorably with the traditional Medicare program by offering lower premiums and cost sharing and expanded benefits… Once a critical mass has enrolled in private plans, Congress will gradually reduce the relative value of the voucher-equivalent, reducing the government component of the funding of Medicare by shifting more costs to the Medicare beneficiaries.”

We see this happening right now, with top leaders of Republican Party expressing a strong interest in cutting Medicare. In response, physician advocates argue that the private Medicare Advantage HMOs should be isolated as a source of wasteful government spending, and that benefits offered by these plans should be expanded into traditional Medicare.  Physicians for a National Health Program (PNHP), the doctor-led think tank for single payer policymaking, has been putting forward a strong case against Medicare Advantage for some years

PNHP points to a number of studies that show the Medicare Advantage HMOs cherry pick healthy patients and lemon drop expensive, unhealthy ones. This is done through narrow coverage networks and poor access to specialized care , driving patients with heavy medical burdens into traditional Medicare – where they can choose their own providers.  A 2015 Brown University study  showed that  of Medicare Advantage patients who had long-term stays in nursing homes,  17% switched to traditional Medicare the next year. The report’s lead author, Momotazur Rahman, told NPR news that there are incentives, including “steep cost-sharing as patients need more expensive care” and “limitations on expensive treatments”,that because sick patients to drop out of Medicare Advantage plans. A 2017 Government Accountability Office (GAO) report found that of 126 Medicare Advantage plans, 35 plans saw disproportionally high numbers of sick enrollees dropping out into traditional Medicare.

In 2017, a Kaiser Family Foundation (KFF) study found one out of every three Americans enrolled in Medicare Advantage plans were given narrow physician networks. It concluded that plans offering broader networks tended to have much higher premiums than narrow-network plans. KFF also found that one out of every five plans do not include a regional academic medical center in their networks, and estimated that 40% of Medicare Advantage networks included top-quality cancer centers. 

The Medicare Advantage insurers can also increase their profits by upcoding the severity of the diseases that their patients have.  HMOs are paid per capita based on the number of patients they cover.  The payments are also risk adjusted according to the severity of the illnesses of those covered: the more severely ill, the higher the compensation. So it is to the Medicare Advantage plans’ advantage to upcode, to make patients seem sicker.   Investigations by the Center for Public Integrityand the work of academics show that there is both direct and indirect evidence of massive upcoding in Medicare Advantage, costing the government and taxpayers tens of billions of dollars.     

While Medicare Advantage is not an efficient or an equitable means of offering care to senior and disabled Americans, it’s important to look into some of the benefits that satisfied patients (who tend to be healthy) are grateful for. All of these benefits would be offered (and enhanced) through a national health insurance system like National Improved Medicare for All (NIMA).

NIMA would eliminate copays, narrow networks and provide long-term care, bringing both sick and healthy Americans into the same risk pool while extending that pool to include everyone. There is a growing consensus that Medicare Advantage, while masqueraded as offering better choices to patients about the type of care they receive, doesn’t extend those choices to sicker enrollees. 

Too often, privatization of essential public services is framed as an opportunity to offer better consumer choices and a reduction in costs. The irony of the relatively skimpy proposals put forth by the Campaign for Medicare Choices is that National Improved Medicare for All would actually give seniors and disabled Americans more choices than Medicare Advantage does, with the addition of long-term care, dental care and other essential medical services.

What is the Campaign for Medicare Choices fighting against? It’s not the movement for Medicare for All – yet. The real motivation is a very modest reduction in government subsidies for private Medicare Advantage plans, which are already inflated well above real costs to the point of making these insurance companies record profits. What this initiative is doing is picking up on the very real fears of Medicare coming under threat and redirecting it to protect corporate interests. Meanwhile, Republicans in Congress are pushing for substantial cuts to Medicare and Medicaid. As advocates for a system that provides healthcare as an essential human right, our attention is better focused on resisting this agenda and demanding National Improved Medicare for All.

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Statement on Health Bills in the 2018 Maryland Legislative Session

1. HEALTHY MARYLAND ACT (HB1516/SB1002) 

Introduced by Senator Paul Pinsky and Delegate Erek L. Barron.

Summary: This legislation seeks to expand health coverage to all Marylanders by obtaining waivers from the federal government and changes to federal laws. All state and federal healthcare dollars could then be  pooled into a single fund that would cover the healthcare needs of all Maryland residents..  New federal waivers and changes in federal law will be difficult to obtain and could have unintended consequences such as harming Medicare.

Position: Not endorsed/Not opposed. Healthcare is a Human Right Maryland supports attempts toward universal coverage at the state level. We recognize that due to federal barriers, a single payer healthcare system is most achievable at the national level.
 

2. SAFE CONSUMPTION SPACES (HB326/SB288)

Introduced by Senator Brian Feldman and Delegate Dan Morhaim.

Summary: This legislation authorizes the establishment of an Overdose and Infectious Disease Prevention Supervised Drug Consumption Facility Program by a community-based organization to provide a place for the consumption of pre-obtained drugs, provide sterile needles, administer first aid as needed, and provide certain other services.

Position: Support. The provision of safe and supervised space for drug consumption is an important step for reduction of harm to the individual user, including preventing death from overdose, and protects public health. It begins the process of treating drug consumption as a public health issue rather than a punitive approach. 

There will be a lobby day organized by the Baltimore Harm Reduction Coalition to advocate harm reduction policies on March 7, with buses traveling from Baltimore.
 

3. PROTECT MARYLAND HEALTH CARE ACT (SB1011/HB1167)

Introduced by Senator Brian Feldman and Delegate Joseline Pena-Melnyk.

Summary: Starting in 2020, Marylanders who are without health insurance will be assessed a penalty that will either be used to enroll the person in a ‘zero cost’ health insurance plan or held in escrow to be applied as a ‘down payment’ on health insurance during the next open enrollment period. If health insurance is not purchased, the penalty is forfeited.

Position: Oppose. Marylanders who cannot afford health insurance should not be penalized on top of being without health insurance. And Marylanders should not be forced to purchase cheap and shoddy private health insurance that requires high out-of-pocket spending before coverage is provided. Insurance mandates line the pockets of private health insurers that already have high cash reserves. Health Care is a Human Right Maryland supports a National Improved Medicare for All, as embodied in HR 676: The Expanded and Improved Medicare for All Act.


Millennials vs. The Mandate

plain-avocado-toast.jpg

Shifting the blame away from greedy companies and our for-profit healthcare system onto young people living in economic insecurity isn’t going to win equitable healthcare for everyone.

This week, it is likely that more details will emerge about proposed state legislation to cement the Affordable Care Act’s mandate requirement. The law would impose penalties on Marylanders who do not purchase health insurance plans

At a time when it is clearer than ever that National Improved Medicare for All is the only viable solution to our healthcare crisis, the bill would also carry the message that Maryland Democrats are too cosy with the insurance industry. 

With many sources of healthcare funding under attack by the current presidential administration, proponents of the bill will argue that there’s no alternative: enforce the mandate or watch the healthcare marketplace fail. 

We are repeatedly told that the reason why our healthcare system isn’t working is because healthy young people aren’t buying insurance. In order to see savings in the future and to curb health care costs for everyone else, the argument goes, young people need to be nudged by the mandate to pay up.

The trouble with this argument is that the reason why millennials aren’t buying health insurance has nothing to do with selfishness and everything to do with economics. While wages have stagnated for decades, living costs have skyrocketed. In 2016, more young people lived with a parent than a spouse. In 1976, 14.7% of 18-34s were living with their parents. In 2016, the number was 22.9%. This is according to U.S. census data: a study by real estate company Trulia two years ago gave a much higher estimate of 40%.

Millennials are tired of being called selfish. We’re told that our inability to buy a house is because we are buying avocado toast - not because housing prices are up. We’re called lazy and unambitious at a time when the challenges of setting up a successful new business have never been so difficult. We’re criticized for favoring bike lanes and public transit over parking lots and sprawl at a time when spending almost $9,000 a year on a car just isn’t an option. 

At the same time, we hear stories about our parents, who paid their way through college by waitressing, who were able to buy houses, who had the security of being able to work for the same employer for decades. We are a generation that is being asked to pay more for less.

In the infancy of the new marketplace, it was hoped that premiums would be reasonably priced. That is not the case now, and with all but two insurers having pulled out of the MD Healthcare Connection, it is hardly a market at all. When your finances are scarce, none of the options given to you by the mandate look attractive. Do you spend $200 a month on a plan with a $5,000 deductible, $500 month on a platinum plan and stay with your parents another year, or do you pay $700 for no coverage at all? The mandate is supposed to lessen the imbalance between healthy and sick Americans paying into the system. In practice, it doesn't do much for low-to-middle income people ($25k-$50k annual income), who are more likely to pay the penalty than any other group. 

I don’t believe in the “baby boomers screwed millennials” narrative. But if the Democrats decide to pursue that as their political goal in 2018, it will exacerbate an "us vs. them" mentality between the two generations that has been very convenient for political elites and the owning class. And maybe that's the point of all of this. The legislation probably won't even help the Democrats. But it will definitely be beneficial for insurance and drug companies.

The paternalistic cry that "the least you can do to help everybody else is pay money that you don't have in order to not have insurance - or you're selfish and ungrateful" is, like, 2017. As it is for everyone else in this country, millennials deserve more than being forced to pay money for something that most developed nations provide as a human right. National Improved Medicare for All isn't a luxury - it's something we deserve as human beings. And if we can get some avocado toast along with it, that would be super cool.

Want to do more to support Healthcare is a Human Right Maryland? Click here to make a tax-deductible donation or to sign up as a monthly sustainer!


"Because we are citizens": Homeless Baltimoreans Speak on Healthcare Rights

KARINA

MY FRIEND OR LOVED ONE'S NAME IS

My grandmother

THIS IS WHAT HAPPENED TO MY LOVED ONE

Depending on the time of the year, her insurance will only pay a certain amount for her medication. Sometimes it will cost a couple thousand dollars per month.

WHEN I SAW MY LOVED ONE SUFFERING, I FELT

sad because she will suffer without her medication

HEALTHCARE IS A HUMAN RIGHT BECAUSE

Nobody should be in pain when we can help it.

 

LEVITA

I AM FROM

Philadelphia

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

Sometimes I can't pay my copay, so sometimes I don't go to the doctor because of the copay

WHEN MY RIGHTS ARE DISRESPECTED, I FEEL

bad because they will be wondering why you took so long to go

HEALTHCARE IS A HUMAN RIGHT BECAUSE

Everybody should be healthy and have healthcare

 

ANTOINETTE

I AM FROM

Baltimore

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

I have been disabled since 2001. I am on Medicare and Medicaid. I have had the same fillings in since 1984 and they need to be replaced, but I can't afford it. My teeth are falling out.

HEALTHCARE IS A HUMAN RIGHT BECAUSE

Everybody should have the right to their health.

 

JACKIE

I AM FROM

Baltimore

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

In 1978, I got hurt and had to wait all day to be seen in the ER because I didn't have insurance.

WHEN MY RIGHTS ARE DISRESPECTED, I FEEL

angry

HEALTHCARE IS A HUMAN RIGHT BECAUSE

Whether you have insurance or not, people are obligated to treat you.

 

THOMAS

I AM FROM

Baltimore

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

In 1975, I was shot by police during an armed robbery. Hospital staff were harassing me for the bill and started harassing my parents because they couldn't pay.

WHEN MY RIGHTS ARE DISRESPECTED, I FEEL

Honestly, I didn't feel anything because I was in a really bad place at that time. But I still should have been treated differently.

HEALTHCARE IS A HUMAN RIGHT BECAUSE

Nobody in regards to how they're living should be mistreated or stigmatized.

 

VIOLETTA

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

they don't have proper insurance or none at all

WHEN MY RIGHTS ARE DISRESPECTED, I FEEL

disrespected and I feel that the system does not work for me

HEALTHCARE IS A HUMAN RIGHT BECAUSE

we are citizens and as citizens it is a human right to have insurance

 

DEVON

MY FRIEND OR LOVED ONE'S NAME IS

Sue (my mother)

THIS IS WHAT HAPPENED TO MY LOVED ONE

My mother had Hepatitis C. This was a few years ago, before the new drugs were available. She got three months treatment of Infuron, which made her sick. After three months, her insurance wouldn't pay for it anymore. When the new treatments came out, it was too late - she had experienced hepatitic encephalopathy and liver failure. They refused to put her on transplant because they considered her an at-risk patient. She suffered the last year of her life in pain.

WHEN I SAW MY LOVED ONE SUFFERING, I FELT

Helpless and angry. When she died I was relieved because she was no longer in pain.

HEALTHCARE IS A HUMAN RIGHT BECAUSE

It is. And it should be free like in other countries.

 

MICHELLE

MY FRIEND OR LOVED ONE'S NAME IS

Gisella

THIS IS WHAT HAPPENED TO MY LOVED ONE

She was not able to get help when she really needed it.

WHEN I SAW MY LOVED ONE SUFFERING, I FELT

Sad, lonely and disappointed.

HEALTHCARE IS A HUMAN RIGHT BECAUSE

Nobody should be in pain when we can help it.

 

OHU

I AM FROM

Lagos

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

When I do not have insurance

WHEN MY RIGHTS ARE DISRESPECTED, I FEEL

bad

HEALTHCARE IS A HUMAN RIGHT BECAUSE

It enables everyone to be healthy.

 

SIMONE

I AM FROM

Baltimore

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

I've always known - there was that one time I got a really big bill from an ER visit

WHEN MY RIGHTS ARE DISRESPECTED, I FEEL

I felt so mad that I had to take a walk

HEALTHCARE IS A HUMAN RIGHT BECAUSE

The [the government] have got the money for everyone to have it!

 

TERRELL

I AM FROM

Baltimore

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

 I went to the hospital with the flu. I had no insurance and was made to wait for hours while people with Blue Cross Blue Shield went straight through.

WHEN MY RIGHTS ARE DISRESPECTED, I FEEL

disrespected and upset

HEALTHCARE IS A HUMAN RIGHT BECAUSE

Everybody is human and it doesn't matter how much money you have

 

DAMIEN

I AM FROM

Baltimore

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

I had low level Hepatitis C and my insurance wouldn't pay for the drug to treat it. I was able to get the drug by participating in a medical study.

WHEN MY RIGHTS ARE DISRESPECTED, I FEEL

I was upset because I had insurance

HEALTHCARE IS A HUMAN RIGHT BECAUSE

we are already putting money into it

 

VANESSA

I AM FROM

Baltimore

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

As I got older, I noticed a difference. There used to be more free stuff - dentists, glasses, etc. University of Maryland dental school used to provide free care. They don't now.

WHEN MY RIGHTS ARE DISRESPECTED, I FEEL

Sad, hurt and angry

HEALTHCARE IS A HUMAN RIGHT BECAUSE

Everybody should have the same care

 

CHARLES

I AM FROM

Baltimore

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

I broke my left clavicle gwhen I was going to college. My mom's health insurance didn't cover it and I couldn't pay for it because I was attending college instead of working. They kept harassing her with bills she couldn't pay and it it went to a collection unit.

WHEN MY RIGHTS ARE DISRESPECTED, I FEEL

I felt bad because it made credit score go down

HEALTHCARE IS A HUMAN RIGHT BECAUSE

At the end of the day, humans should care about one another.

 

URSULA

I AM FROM

Chicago

I FOUND MYSELF IN MEDICAL DEBT WHEN

I have been blessed to have insurance AND knowledge of how to care for myself

HAVING TO DEAL WITH MEDICAL DEBT MADE ME FEEL

incentive to learn acupuncture

HEALTHCARE IS A HUMAN RIGHT BECAUSE

Every human being needs to have their health to live a healthy, successful, satisfying life.

 

PAMELA

I AM FROM

Baltimore

I LEARNED THAT THE HEALTHCARE SYSTEM TREATS PEOPLE LIKE ME DIFFERENTLY WHEN

A few months ago, a caseworker told me that in order to get insurance and housing I would have to drop my doctors for in-network providers. I did not want to drop my doctors, so I did not sign up for the insurance.

WHEN MY RIGHTS ARE DISRESPECTED, I FEEL

Annoyed. I wondered what was wrong. Pathetic.

HEALTHCARE IS A HUMAN RIGHT BECAUSE

Other countries are doing well with universal healthcare systems.


Call Senator Sanders: We need a Senate Companion to HR-676

At Healthcare is a Human Right Maryland, we are thrilled that Senator Bernie Sanders has promised a Medicare for All bill in the Senate. HCHR-MD urges Senator Sanders to pursue the strongest bill possible, as companion legislation to HR-676, National Improved Medicare for All. In addition, we urge Senator Sanders to act quickly in introducing this legislation, and to not delay while the Senate debates the inadequate AHCA.

We encourage our supporters to call Senator Sanders' office using the call-in tool below, or to sign this petition.


6 Lessons from the UK Election for National Improved Medicare for All

Britain had mass youth riots before us, the biggest anti-government resistance movement since the 60s before us, Conservative victories in 2015 and then Brexit before Trump. What happened last week says a lot about the future of politics in this country. It's also telling for what lies ahead in the fight for single payer healthcare and how we’re going to win. Here are six key takeaways from the 2017 UK General Election for our movement:

1. This is the end of the center-left as we know it. In democracies across the world, we have seen a polarization of politics, with far-right populists and ethnonationalists sparring against a new wave of leftist political activism as the traditional center-left collapses under its own weight. The process has a name, Pasokification, after the Democrat-esque Greek center-left party that went from a major government player into a fringe institution overnight after an election in 2015. 

Had Labour replaced Jeremy Corbyn with a centrist, Theresa May and the Conservative party would have won by a landslide. Instead, we see a leftist coalition built on a visionary plan for a future for the many rather than for the few taking on a highly popular right-wing government and almost beating it entirely after only six weeks of campaigning.

Some will bring up Macron in France as an example of a centrist, neoliberal political party holding its own against the far right. But we need to remember that Nazi sympathizers and collaborators founded the Front National. As Naomi Klein has said, the Front National is more David Duke than Donald Trump. Defeating a party founded by Nazi sympathizers is not a good litmus test for the popularity of centrist politics.

What we do see in Corbyn's Labour leadership is the viability of socialist and social democratic policies as a winnable alternative to the far right. The argument that Sanders had a better chance at winning the 2016 election has been strengthened. That said, Sanders has a history of hugging the center left.  We need to keep calling his office to make it known that the Medicare for All bill he’s putting together right now has to be a companion bill to HR676 that guarantees healthcare based on principles of universality, accountability, equity, transparency, and participation. Hopefully, his recent visit to the UK has reminded him that these compromises aren’t necessary.

2. The Labour manifesto, a visionary policy document outlining the party’s priorities, resonated with British youth, who were expected to not turn out. But they did. Appealing to the youth vote with a radical message is a better strategy than appealing to the right, as Clinton did fatally in 2016.  Ed Miliband failed miserably as the head of Labour in the 2015 election - the "I'm Voting Labour for Controls on Immigration" mugs they put out for sale during that campaign didn't go down so well. 

Labour's "Controls on Immigration" mug from the 2015 election. After promising a leftist campaign, the party veered to the right, likely Labour voters failed to turn out, and the Conservatives celebrated a massive electoral victory.

Labour's "Controls on Immigration" mug from the 2015 election. After promising a leftist campaign, the party veered to the right, likely Labour voters failed to turn out, and the Conservatives celebrated a massive electoral victory.

In contrast, Corbyn's election shows that if you as a politician are willing to support left social movements, even and especially at your own expense because you know it’s the right thing to do, you will be gifted with a massive influx of energetic and talented campaign volunteers.

Becoming a champion for HR-676 is crucial for US politicians facing tough re-election battles in 2018, especially when young people tend to not turn out in high numbers for midterm elections. Democrats took the youth vote for granted in 2016. Just because the youth didn’t turn out for them, that doesn’t mean that they won’t in the future.

Along with free college tuition, paid sick leave and the fight for 15, National Improved Medicare for All is a project that appeals to the sensibilities of the same demographic that just destroyed Theresa May’s career. Labour only didn’t win because she called the election at the height of her popularity and they only had six weeks to campaign.

3. Brexit was a protest vote against the status quo. It also had strong elements of racism and xenophobia. Last night we saw populations that voted Brexit also chose a leftist vision of a government for the many, not for the few. A left populist platform can bring voters – even baby boomers – back from the pearl clutching racism of the far right. Much anti-racist work needs to be done here and the UK. But it’s important to note that hope for the future was a greater motivation last night than fear of the immigrant other.

4. Mainstream media cannot be relied on to support or accurately represent the advocacy work we do, or to give a fair chance to politicians who champion our message. We have to be our own media if we want to win. Every mainstream media source, even The Guardian, wrote Corbyn off as a radical old man out of touch with reality. Independent and activist-run media organizations like The Canary and Novara stepped into this role and in many cases provided superior commentary to established sources.

5. The far left needs to stop distancing itself from electoral politics. This doesn’t mean that people who have felt disenfranchised should shut up and vote for whichever Democrat is on the ticket. Corbyn’s leadership of Labour happened because the young activists who he had offered support to during the student and anti-austerity movements made him the leader of the Labour Party. And then campaigned on the streets to get him elected. In many ways, this election has been a reckoning of scores for left social movements. The victory is more theirs than Labour's.

6. Labour may have won enough seats to make it difficult for the Conservatives to form a government, but the latter still won the election. Labour would have won if it hadn’t been for continuing attempts within the Labour Party to replace Jeremy Corbyn with a centrist alternative.

Some centrists will cling to the status quo and try to poison our message that healthcare is a human right, calling it an impossible task or something to be done at the state level or something to wait another decade for. That’s the DNC party line. But the Democrats have a choice to make: they can either be the party with a platform based on whining and using Russia and Trump as an excuse for inaction, or they can be the party of the future. 

In the meantime, our movement will continue to grow. National Improved Medicare for All is no longer a pipe dream – it’s the future. 


Hunger Games and Hospitals: The Crisis of Medical Crowdfunding

Medical crowdfunding doesn't exist in Canada. If we enacted Single Payer (National Improved Medicare for All, HR676), Americans wouldn't have to compete with each other on the GoFundMe marketplace in order to receive the care that they already deserve as a basic right.

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As of the time of writing, a GoFundMe campaign to raise $300,000 for the medical expenses of Micah Fletcher has nearly reached its goal. Fletcher, 21, is the only survivor of the three men who intervened on a racist attack against two girls on a train in Portland, Oregon. The girls were Destinee Mangum, who is Black, and her friend, a Muslim wearing a hijab. A YouCaring page has also been set up to raise money to help them in their recovery:

The girls, 16 and 17-years-old, are suffering immense trauma in the aftermath of this tragedy. Although they survived, their lives will never be the same as they were being the targets of hate... Most importantly, funds will go toward mental health services to ensure their mental and emotional welfare.

The crowdfunding campaign for Micah Fletcher's expenses brought new attention to the growing trend of Americans relying on GoFundMe and similar services to pay for their hospital bills. If even a hero has to raise money to pay off his medical debts, the argument goes, the US health insurance system is messed up beyond belief.

 

When I saw these tweets, I understood where they were coming from, but they also made me, as someone whose job it is to advocate for single payer (HR-676), feel uneasy. Because you should not have to offer a hero’s tale in order to be given healthcare as a right. You should not have to be someone who defends children against a hate crime in order for Americans to step away from the culturally ingrained attitude that people end up with medical debt or desperately in need of care because of poor choices they made in life.

A study of the crowdfunding campaigns that took place in the year 2015 found that 41% of them were created to cover medical costs. With medical debt acting as the leading cause of bankruptcy in the United States, it is hardly surprising. But it's also definitely not an adequate solution: of medical crowdfunding campaigns, only 11% reach their goal.

Who makes it into the 11%? K. Thor Jensen writes:

Fundraising campaigns rely on internet access, the ability to take good photographs and write compelling text and reach over social networks. Some of the people in the greatest need don’t have the ability to do those things. For every GoFundMe success story, there are hundreds of others who never meet their goals. And thousands more — people in poverty, people who don’t speak English — don’t have access to the platform at all.

In a blog post for Health over Profit in April, Dr. Margaret Flowers brought up a recent article in the L.A. Times that offered advice on how to "sell" your medical crowdfunding page. She noted that "families have to market themselves so that potential donors will find them worthy of living".

The most grating contradiction that Fletcher's Gofundme account represents is not that it has to exist. It's that the marketplace for crowdfunding favors people with social connections, people who can offer a good story, people who come across as not deserving bankruptcy. It's a spinoff of the Hunger Games (The Hospital Games), asking the powerless to compete with one another in order to survive in a society that punishes people for being sick, especially people in marginalized positions. In a society where there are more than enough resources for everyone - they only need to be redistributed.

Even if your name is on national news, that doesn't mean that your campaign is going to reach its goal. Of everyone who survived the Portland attack, according to the crowdfunding market, Micah Fletcher is the person most deserving of our support. Although he stood in solidarity with the girls on that MAX train, the crowdfunding economy positions him as their competition.  On the morning of June 1, Fletcher released a video on his Facebook page in which he challenged what he called "the white savior complex" and asked his financial supporters to help him shift attention away from himself and onto the two girls who survived the attack.

And so, if even national recognition can't break all the barriers to reaching your goal, what can we do to change the situation to make it more equitable, to redistribute the burden that disproportionately affects certain bodies? We can take inspiration from the fact that Destinee and her friend did not have to market themselves as worthy of the risks that were taken to protect them. The three men stepped in because it was simply the right thing to do. In that moment of confrontation we see an example of the way in which we, as a society, should respond, not just to the threat of white ethnonationalism, but also to the violence of our broken healthcare system. We must respond by fighting for a world that is based not on competition but on caring for one another, without reserve, without prejudice, without preconditions. As Fletcher put it,

When a kid gets hurt like that, we as a society, as a world, have a moral obligation to do something about it, and to help them.

If healthcare is a human right, that right must be universally applied to everyone. It’s easy to say that an infant should not be discriminated against in healthcare for being born sick. It’s harder to talk about the barriers to care that are experienced by people who use drugs when they are already written off as deserving of whatever happens to them. It’s easy to point to the case of an uninsured single mother working an 80-hour week on minimum wage when we argue for National Improved Medicare for All. It’s harder to talk about the medical struggles of incarcerated women both during and after their time in prison, or the fact that in the 21st century, we are still seeing high rates of sterilization in women’s jails.

They didn’t even know me,” Desinee Mangum said of the men who rushed to her defense. “They lost their lives because of me and my friend and the way we look.” Beyond our individual ability to donate to medical crowdfunding campaigns that don't exist in Canada, the best way to celebrate the men who died in Portland is to emulate their actions. In our own advocacy, whether it is related to healthcare, disability rights, environmental justice, labor rights or racial justice, we must communicate that no one should have to prove their own worth in order to be afforded the best possible life, not if we are to call ourselves a truly civilized society.


“I’m scared I’m not going to make it to my 31st birthday"

An interview with Sarah Lau of Manchester, MD

 

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Sarah Lau isn’t your typical 30-year-old-mom.  Diagnosed with a range of health issues in her teens, including generalized anxiety disorder, IBD, endometriosis and OCD, Sarah has spent much of her life in doctor’s offices and emergency rooms. Because of this, Sarah says, she, her husband and their two kids live “in forced poverty in order to have Medicaid”. Both of Sarah’s pregnancies were described by her doctors as miracles, and both took a heavy toll on her body. Now diagnosed with Ehlers-Danlos Syndrome (EDS), Sarah is on a 3-year waitlist to find out how dangerous her condition is.

The National Institute of Health defines EDS as “a group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues”. The three-year wait period is especially precarious, as the symptoms of EDS “vary from mildly loose joints to life-threatening complications”. While there are many hospitals she could go to, the one with the longest wait period is the only institution that accepts Medicaid.

Meanwhile, the AHCA, which would cut the Medicaid budget by 25% over 10 years, endangers the lives of millions of Americans who, like Sarah, rely on Medicaid in order to survive. For the bill's proponents, the care that people receive through Medicaid is a luxury that can be retracted in times of austerity. But navigating Medicaid as it is now is a full-time job for people like Sarah, and her quality of life is already severely restricted.

We sat down with Sarah to talk about the difficulties of being a Medicaid patient, the consequences of the increased stigma and regulation of opiates for her as a poor, disabled person, and the ways in which National Improved Medicare for All would benefit her family.
 

Brittany: Tell me more about Ehlers-Danlos Syndrome (EDS).

Sarah: I’m in a wait to get typed. There are six different types of EDS and I fit the clinical criteria for 3 different types. One of them is bad, potentially fatal, so I have to get tested soon. It’s the vascular type, where veins and arteries can spontaneously rupture, as well as organs. My grandmother had her first aneurysm at 38. I’m 30 now.

The only hospital that accepts my form of Medicaid is GBMC. And the top doctor in the world for EDS is at GBMC hospital. Here’s the thing: it’s a 3-year wait. You apply for an appointment and they call you in a year to schedule your appointment. It’s a 30-page application. I have a friend who applied in September of 15, got the call in December of 16, and then her appointment is in 2018.

University of Maryland could fit me in a month, but my insurance isn’t accepted there. At Hershey, I found out that they could fit me in and they do accept my insurance but it might not go through because there is another hospital in Maryland that offers the same treatment. Right now, I’m working on finding out if it will go through.


What’s your biggest pet peeve right now?

Pain medication [opioids]. I hate it so much. But my grandmother hates her insulin for her diabetes, but she still does because it keeps her alive. I’m on a teeny tiny dose to just keep me going. My rheumatologist informed me yesterday that this was the last script he was going to do, so now I have to go to a pain clinic. It’s difficult for me to get to a pain clinic.

Hogan declared a state of emergency for the opioid epidemic and I think that’s what made the doctor not able to give me my prescription. I think it’s interesting that they’re putting all this money into fighting the epidemic instead of funding research to alternative pain medications.

Since talking to you, I’ve had three fractures. Yesterday, when I got that phone call, I broke down. The first thought that was through my head was, “this is how I die”. It’s such a huge topic for me because if I didn’t have to take pain medication, I would be so much happier, because I hate it. I don’t like the sluggishness and I don’t like the addictiveness of it.


Between trying to figure out the care you need, going to all the doctors you need to see, arguing over your prescriptions and everything, and figuring out what you’re going to be covered for, it sounds like a full-time job.

It is. I really don’t have time for a lot else. I am dealing with some sort of health issue on every day. I have lists of things that I know I should do but that I don’t feel like taking care of at the moment, like my GYN believes that I have pelvic floor prolapse happening. And gave me the referral for the urologist, but I have not made the appointment, mostly because I have so much going on already that I’m dealing with, that I can’t even deal with another medical thing at this point.
 

We finally this year are seeing a word attached to the unspoken expectation that everyone just needs to buckle up their bootstraps and get on. They’re calling it “grit”, American grit. How do you find that this expectation affects you in accessing the care you need? Do you feel like there are a lot of assumptions that are made?

Especially because of me being on Medicaid. I have found also that it depends how I look. When I go into a doctor’s office, if I dress like I am now in sweats, I am treated differently than if I go in there and do my hair. Sometimes I’ll put on makeup and perfume or something. Just so I get better results from my doctors. It’s awful that I have to do that, but if you don’t look right and you have Medicaid, it’s all “you’re just a druggie, you’re just some loser that doesn’t want to work and is lazy”.

It’s a horrible, horrible thing that I’ve been stuck with. I had no choice. And there’s nothing I can do about it. It’s just my life. It’s very frustrating to know that I am treated differently because of it. I went to my orthopedist for my first SI problem. At this point, I had already been diagnosed with it. And he came into the room with his hands clasped and he leaned forward and he goes [in a baby voice] “Hi honey, so why do you think you have SI problems?” And I went “well, because of the diagnostic criteria that I’ve been having and the fact that my GYN and both my physical therapists have said that it’s been rotated, that it’s posterially rotated and winged out”. And he just looked like “whoa, whoa” and the whole entire dynamic of the conversation changed. But his initial reaction was “talk to her like an infant”. And it’s kind of sickening, that it was his gut, go-to reaction, what he saw on my chart.
 

Do you think that this new awareness of opioid addiction as a problem has contributed to this?

Oh yeah, definitely. Like I said, I understand that it is most definitely a problem and that there are people who are taking it that shouldn’t be taking it. But the patients that need it are getting punished. It’s so sad, there was a case in Virginia a few months ago. A man killed his wife. He shot her because she lost her pain medication and he couldn’t take to see her suffering any more. And he actually turned himself in. He said, “I just couldn’t do it any more. I couldn’t see her like that any more. She was dying in front of my eyes and I had to make it stop”. And they looked back on the case and it was a pretty desperate situation. The way he put it was, “you wouldn’t let a dog live in the amount of pain that they were letting her live in” and [her doctors were] just saying “well, there’s an opioid crisis, so sorry” and that was their only response. People are getting swept under the rug, basically.
 

Do you feel like your gender or being diagnosed with so many illnesses and other factors like that, do you think it all has an effect on the perception of the levels of pain that doctors feel you can endure?

Yeah, definitely. I get confused because they know that I’m in pain, but they feel like I should just deal with it. Especially with my gender. With the endometriosis. I had always complained that my cycles were incredibly painful and it didn’t feel right, and doctors would just [respond that] “Oh, it hurts”. And then we found out that I had this endometriosis thing going on.

So when I go in with issues, first they say, “well, it could be in your head’. Then, they start looking at the actual medical documentation. With my weight loss going on right now, my GI’s first response was “Have you seen a psychiatrist?” And he basically diagnosed me with conversion disorder, which is the new name for hysteria. And then it turns out that I had this jaw problem going on.

I’ve run the gamut of doctors. I also have doctors that are fabulous. My neurologist is actually fabulous. She actually cares, she takes time to ask questions to me. She sees a lot of weird things happen. I feel most doctors don’t want to take me on.
 

Do you think they might be worried about malpractice?

That’s exactly what I think. That they think, “well, that’s a special case right there, I don’t want to touch it with a ten-foot pole”. The GYN will say, “Oh, it’s your IBD”. And so I’ll go to the GI, and they’ll be like, “Oh no, it’s this”. And so they keep sending me to my different specialists. Because they don’t want to take care of the problem. That’s what it feels like.


The HR-676 bill (National Improved Medicare for All) would classify healthcare as a human right. If it was codified into law as a human right, do you think that it would affect the treatment that you get?

I do. I really do. Because everybody, all the doctors are so scared to write prescriptions. Because they are scared of the DEA coming in on them or FDA regulations coming in and saying “you’re doing this wrong”, or that they’ll get fined. Or they’ll lose their license. It’s noticing the trend of how scared doctors are getting to write these prescriptions. Like, my rheumatologist, before he wrote the first prescription, was, he laid out, “I’m only going to do this amount, this is all I feel comfortable with”, and he laid rules down to be able to have them. And I think that if patients were treated like patients, it would be better, instead of treated like a number, kind of, that’s just to be taken care of and pushed out the door.

Hundreds of years ago, you had to pay for fire insurance. And they gave you a big metal plaque that you put above your door. And there if there was a fire in the house, the fire department would come and they would say, “OK, you’ve got a plaque, we’ll put out the fire”. And if you didn’t have a plaque, they kept driving. They didn’t stop. But now, if somebody calls the fire department, they don’t get a bill. I feel the same way with health insurance. It’s seen as a luxury when it doesn’t have to be.

 

Tell me about the ideal health system. What sort of features do you think would make your life a lot easier?

My husband has only been allowed to make a certain amount so that we can qualify for Medicaid. I have to live here [with my parents] and I can’t apply for disability because if it would take us over the cap on income and we would lose Medicaid. We’re basically in forced poverty in order to have Medicaid.

Honestly, if we didn’t have to worry about our income level to be able to have health insurance, that would be a game changer on so many levels. I could do some sort of work from home option. I could potentially get a job. Or just apply for disability and be able to have that extra income. That would change our lives.
 

Do you think it would also change your children’s lives?

Oh, most definitely. They have had to deal with entertaining themselves because I’m on the phone with the insurance company so many times. I am on hold a lot. They’ve just learned, “Mommy has to go on the phone a lot”. Right now, I’m still fighting something that happened two years ago. It was a technical error with our insurance and we lost Medicaid for a week. And it was $1900 for two physical therapy visits. It’s little things like that. It takes time away from my children and it makes me more stressed out, which stresses them out, because they don’t understand, they really don’t understand what’s so frustrating about it all. My daughter knows a lot about insurance. She’s eight years old.

 

One of the reasons why I was really excited to interview you is that your experience challenges the way that illness and disability are presented in society, especially all this “disability porn” and inspiration stories.

[groaning] Oh my god, yes.
 

And not just that, but also the social trend telling us we should all love our bodies. I have friends who don’t love their bodies and don’t like being told that because they are in a lifelong struggle with their bodies. Do you think that there is a systemic gap in understanding the challenges that you are going through? And also, do you think that all these different distractions, like doctors who are worried about malpractice, doctors who are maybe judging you because of the opioids… do you think that all these things are preventing doctors from educating themselves and from being able to try out better types of care?

Oh, most definitely. They’re so scared about the government stepping in and potentially harming them in some way professionally. It’s almost like a real, palpable fear of branching out, because they don’t know if it’s even going to be covered by insurance. Because there’s a lot of experimental treatments that they’re like, “Oh, well, I can’t do that because it’s not exactly covered”. And there are people that are getting denied procedures because the doctors aren’t sure if the insurance is going to come through and pay it.

There’s a lot more information about EDS going on right now. And that’s been a campaign by the EDS society. Doctors are learning a bit more, but when I first talked to my primary care doctor about it, she said, “Well, I’ve heard about that, hold on”, and she went and got a textbook and read an eight-sentence paragraph about it. And she was like, “Well, this isn’t a big deal. You just bend more. There are a lot of gymnasts and acrobats and stuff that do this. It’s not a big deal or anything”. That was her response.

And I was just, “Oh, OK, so it’s not a big deal. I am just faking this. I’m just, I’m a wuss”. That is basically what I feel like I am being told: “You’re just a wuss. You need to buck up and deal with this. There are people that have so much worse. Why are you acting this way”?

It’s very upsetting. My quality of life is pretty bad right now. I feel like there’s a supernova going off inside my body. And everything’s falling apart. And I’m scared. I’m scared I’m not going to make it to my 31st birthday. And I’m getting the feeling from not only health professionals, but also regular people, that “others have it worse, so why are you complaining”, kind of thing. Yeah, there are people who have it worse, but my situation could be better. And there are ways to go about that.

Basically, I have been doing my best to tell everybody about HR-676 because I believe that our nation would change drastically for the good. We would have not only people surviving, but also in better health and more productive in society. If you’re more productive, you can take time to educate yourself, get a further education, which helps your children, which helps society in general. I really think that could be a turning point for our country, if healthcare was available to everybody.


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