[Editor’s note: Ady Barkan passed at the age of 39 on November 1, 2023 from complications of ALS. We are reprinting his Congressional testimonies in honor of the work he did to help build a world where healthcare is a human right and no one is denied care. To find out more about Ady and his work — and to join in the effort for change — go to beaherofund.com.]
Testimony of Ady Barkan
U.S. House of Representatives
Committee on Rules
April 30, 2019
Chairman McGovern and members of the committee, thank you for inviting me to testify today. My name is Ady Barkan. I am thirty-five years old and I live in Santa Barbara, California with my brilliant wife Rachael and our beautiful toddler Carl. She is an English professor at the University of California Santa Barbara and I am an organizer at the Center for Popular Democracy and the Be A Hero project.
I earned my bachelor’s degree from Columbia University with a major in economics and my law degree from Yale Law School. For 20 years, since I was a freshman on my high school debate team, I have been giving speeches and presentations on topics like healthcare reform and the federal budget.
But never before have I given a speech without my natural voice. Never before have I had to rely on a synthetic voice to lay out my arguments, convey my most passionately held beliefs, tell the details of my personal story.
Three years ago, Rachael and I felt like we had reached the mountaintop. We had fulfilling careers, a wonderful community of friends and family, and a smiling, chubby infant boy. We could see decades of happiness stretching out before us. The sun was shining and there was not a cloud in sight. And then, out of the clear blue sky, we were struck by lighting. ALS. A mysterious neurological disease with no cure and no good treatment. A life expectancy of three to four years. Most of its victims are in their 50s and 60s. I was 32.
Every month since my diagnosis, my motor neurons have died out, my muscles have disintegrated, and I have become increasingly paralyzed. I am speaking to you through this computer because my diaphragm and tongue are simply not up to the task.
Although my story is tragic, it is not unique. Indeed, in many ways, it is not so rare. Jennifer Epps Addison, the president of my organization, is sitting next to me. Like me, her husband was struck at a young age by a neurological disease. Multiple sclerosis.
Ten percent of Americans have a serious disability. Every family is eventually confronted with serious illness or accidents. On the day we are born and on the day we die, and on so many days in between, all of us need medical care.
And yet in this country, the wealthiest in the history of human civilization, we do not have an effective or fair or rational system for delivering that care. I will not belabor the point, because you and your constituents are well aware of the problems: high costs, bad outcomes, mind-boggling bureaucracy, racial disparities, bankruptcies, geographic inequities, and obscene profiteering.
The ugly truth is this: health care is not treated as a human right in the United States of America. This fact is outrageous. And it is far past time that we change it. Say it loud for the people in the back: health care is a human right.
For my family, although we have comparatively good private health insurance, ALS now means paying out of pocket for almost 24-hour home care. This costs us $9,000, every month. The alternative is for me to go on Medicare and move into a nursing home, away from my wife and my son. So we are cobbling together the money, from friends and family and supporters all over the country. But this is an absurd way to run a healthcare system. GoFundMe is a terrible substitute for smart Congressional action.
Like so many others, Rachael and I have had to fight with our insurer, which has issued outrageous denials instead of covering the benefits we’ve paid for. We have so little time left together, and yet our system forces us to waste it dealing with bills and bureaucracy.
That is why I am here today, urging you to build a more rational, fair, efficient and effective system. I am here today to urge you to enact Medicare for All.
There are three simple reasons why Medicare for All is the right solution, the only solution, to what ails the American healthcare system. I will summarize them here, but I urge you to read the fantastic testimony submitted by the National Nurses United for more details.
First, Medicare for All will deliver to everyone living in America the high quality care that we deserve. The law will provide comprehensive care, including primary and hospital care, dental, vision, reproductive and mental health care. We will all be allowed to see the doctors and specialists we want. And, crucially, the program will provide for long-term services and supports that will allow people like me to stay in our homes and communities, with the people we love.
This will dramatically improve life for the tens of millions of people whose families include older or disabled people. Second, Medicare for All will save the American people enormous sums of money. Under the program, there will be no premiums, no deductibles, and no copays. That means that we will no longer need to choose between paying the rent and filling a prescription. It means we will no longer delay necessary care until it is tragically late and tragically expensive.
It means that we won’t have to worry every year when our employer announces the new rates. It means that we can finally start to eliminate the atrocious racial and economic disparities that destroy so many lives, that rob our communities of so much dignity, that strip us all of our common humanity.
Any proposal that maintains financial barriers to care — any proposal that continues to charge patients exorbitant copays, deductibles and premiums — will necessarily leave people out. Any proposal that maintains the for-profit health insurance system will require that some people don’t get the healthcare they need. Without the generous support of my family and friends, this would include me.
Crucially, Medicare for All is the only way to make our healthcare system more efficient.
Over the past three years, I have seen first hand how the current system creates absurdly wasteful cost-shifting, delays, billing disputes, rationing, and worry.
Administrative waste is costing us hundreds of billions of dollars every year. Medicare for All will streamline the entire system, letting doctors and nurses focus on delivering care instead of on paperwork. As a single payer program, Medicare for All will be able to eliminate immoral price gouging by pharmaceutical and device companies. The fundamental truth is that too many corporations make too much money off of our illnesses, and they are spending gazillions of dollars lobbying and campaigning and fighting to stop us from building something better.
It is very important to emphasize the following point: these cost savings are only possible through a genuine Medicare for All system. Other proposals to increase health insurance coverage, such as those that would make Medicare compete with private insurance, would not facilitate administrative and billing savings.
There are many other major benefits to Medicare for All, and these are detailed in the written testimony submitted by the nurses and others.
But my time to deliver this testimony is running out. And, in a much more profound sense, my time to deliver this message to the American people is running out as well.
So I want to end on this third and final note. Our time on this earth is the most precious resource we have. A Medicare for All system will save all of us tremendous time. For doctors and nurses and providers, it will mean more time giving high-quality care. And for patients and our families, it will mean less time dealing with a broken healthcare system and more time doing the things we love, together.
Some people argue that although Medicare for All is a great idea, we need to move slowly to get there. But I needed Medicare for All yesterday. Millions of people need it today. The time to pass this law is now.
Winning this reform will not be easy. The monied interests will do everything in their power to stop us. And yet despite these obstacles and despite the personal challenges that I face, I sit before you today a hopeful man, a hopeful husband, and a hopeful father.
I am hopeful because right now, there is a mass movement of people from all over this country, rising up. Nurses, doctors, patients, caregivers, family members — we are all insisting that there is a better way to structure our society, a better way to care for one another, a better way to use our precious time together.
And so my closing message is not for the members of this committee. It is for the American people.
Join us in this struggle. Be a hero for your family, your communities, your country. Come give your passion and your energy and your precious time to this movement. It is a battle worth waging, and a battle worth winning. For my son Carl, for your children, and for our children’s children.
We have a once-in-a-generation opportunity to win what we really deserve. No more half measures. No more healthcare for some. We can win Medicare for All.
This is our Congress. This is our democracy. And this is our future for the making
Testimony of Ady Barkan
U.S. House of Representatives
Committee on Oversight and Reform
March 29, 2022
Good morning Chairwoman Maloney, Representative Bush, and Members of the Committee.
Thank you for holding this hearing and inviting me to testify. My name is Ady Barkan, and I am the Co-Executive Director of Be A Hero, an organization whose mission is to win health justice in America.
As you can see, I am currently in bed. I live in California, and it is rather early here. And because I am living with the neurological disease ALS, which has left me almost completely paralyzed, it takes me a very long time to get ready in the morning.
So, I am grateful for your grace in permitting me to participate from bed. But I am even more grateful that it is my bed, in my bedroom, in the home I share with my wife and our two young children. I am able to live at home because I have 24-hour home care. Without it, I would be forced to live in a nursing home, separated from the people I love. I don’t know if that would be a quality of life that I would be willing to tolerate. Home care is literally keeping me alive.
Three years ago, I came to the Capitol to testify in the Rules Committee at the first ever hearing about Medicare for All.
I was emaciated, weighing about a 100 pounds, down from 160. I had trouble breathing, and was sweating even though the room was cold.
Every month, my body deteriorated further. I felt like I was dying.
Later that year, I had to decide whether to get a tracheostomy, a procedure to implant a breathing tube into my windpipe, to compensate for my failing diaphragm. But I didn’t know how I would be able to pay for the care that would allow me to stay alive. My insurance had already denied me a ventilator, stating that it was experimental, and then two weeks after that, they rejected access to an FDA approved ALS drug.
Even good health insurance, which I have, does not cover the long-term home care I need to survive. Paying out-of-pocket would have left my family bankrupt quickly. And so for too long after my diagnosis, my wife, Rachael, and I tried to get by without home care, which put the burden on her to care for both my young son and me.
We eventually secured 24-hour home care after suing my health insurance company in federal court. Home care has been life-changing, allowing me to participate in my family’s life in ways I thought were no longer possible for me.
My daughter Willow was born 6 months after I gave my testimony, and now I’m a father to two beautiful, wild children.
But it shouldn’t take a seasoned activist, a team of lawyers, and the generosity of strangers and friends to get the health care you need to survive. The reliance on crowdfunding to afford health care is a uniquely American tragedy. My outcome is the exception, but the challenges we faced, fighting insurance companies for services we are rightfully owed, are not.
We spend such absurd amounts on health care, and we get such bad outcomes for our money.
The high costs of care and infuriating bureaucracy burdens all of us, including nurses and doctors, working families and small businesses. The only people who benefit from this absurd system are the corporate executives who profit off of our pain, and spend inordinate amounts of money trying to stop you from making life much better for your constituents.
We’ve allowed greedy healthcare corporations to set the parameters of what we can expect of our healthcare system, and because of it, we’ve been forced to normalize the fate of bankruptcy, illness and death. It’s shameful that in the richest country in the world, we choose to inflict so much suffering.
Since that first hearing about Medicare for All, our country has been through the worst public health crisis in a century.
The pandemic has revealed and exacerbated the existing inequalities in our profit-driven health care system. It has hit hardest on disabled people, poor people, black, Latino, and indigenous people, and especially people who live at the intersections of these categories. And one out of three Covid-19 deaths in the U.S. are related to gaps in health insurance.
Nearly a million Americans have already died from the coronavirus. How much more is necessary to shock our legislators into action? When we lost 3,000 lives on 9/11, we responded by reorganizing our national security system, launching a global war on terror, and conducting two massive invasions and occupations. Three hundred times more people have died in this pandemic, but we have not marshaled our national energy to build a better health care system.
It is a scandal and it is a shame.
But in the last two years, we’ve also seen glimmers of what’s possible when our government takes action to prioritize people over profits, and works to guarantee care for all. Congress subsidized the Affordable Care Act marketplace plans, leading to unprecedented enrollment, and paid states to keep millions more people on Medicaid.
As a result, More Americans have health insurance than ever before. Taxpayers funded vaccine research, and then, our government made vaccines easily accessible to all at no cost. And recently, our government made rapid test kits available to all Americans who requested them, free of charge.
These programs and many others are at risk of ending if Congress does not fund them and, when the pandemic emergency policies expire, instead of returning to the status quo, which fails all of us and especially our most vulnerable communities, we should build on the progress we have made during the pandemic.
The American people deserve so much more, and so much better. Our seniors and disabled children and adults deserve to live at home, not be warehoused in institutions. Working people deserve high-quality care regardless of their income or their employer marital status.
The people of rural America deserve good mental health care options, good community clinics, good accessible hospitals. And so do the residents of poor urban America, and the people who live on Indian reservations.
And seniors on Medicare deserve care also for the parts of their body above their necks, which means their teeth and eyes and ears and minds.
We can and must do better. We know what the solution is. A system that brings everyone in, and abandons no one. Where we are patients and people, not opportunities for profit.
The road to reach the better world of our imagination may be long. And there are many obstacles in our way. But our north star is clear. It is time for America to guarantee comprehensive, affordable health care to all. The best way to do that is by enacting Medicare for All. If each one of us continues to demand better, if together we build an even more powerful movement for health justice, then I know that someday we will get there.
In this new book, longtime organizers and movement educators Mariame Kaba and Kelly Hayes examine the political lessons of the Covid-19 pandemic and its aftermath, including the convergence of mass protest and mass formations of mutual aid. Let This Radicalize You answers the urgent question: What fuels and sustains activism and organizing when it feels like our worlds are collapsing?
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