Dying man to Congress: GoFundMe is not a health care plan

At a first hearing Tuesday, they invited high-profile health care activist Ady Barkan, a 35-year-old father who is confined to a motorized wheelchair by ALS, to testify on the Medicare for All bill introduced recently by Reps. Pramila Jayapal and Debbie Dingell.

Speaking through a voice synthesizer, Barkan challenged Democrats who support making incremental changes to Obamacare to back swift and drastic action instead.

"Some people argue that although Medicare for All is a great idea, we need to move slowly to get there," he said. "But I needed Medicare for All yesterday. Millions of people need it today. The time to pass this law is now."

"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," Barkan told the committee, using software that tracks his eye movements and converts text into speech.

Barkan's testimony was designed to cut through debate about the hefty price tag and political tradeoffs attached to creating a government-run health program.

The hearing itself was initially set to be more mundane and limited in scope until Democratic Rep. Jim McGovern of Massachusetts, chair of the House Rules Committee, invited Barkan, who founded the Be a Hero PAC.

"Congress should be a place where we tackle big things," McGovern said. "I know we won't pass this bill overnight, but we won't pass it if we don't start the dialogue."

Republicans took issue with Democrats' decision to hold the hearing in the Rules Committee, when other committees like Ways and Means and Energy and Commerce have greater jurisdiction of the contents of the bill.

The top Republican on the committee, Rep. Tom Cole of Oklahoma, called Jayapal's plan "a socialist proposal that threatens freedom," and criticized the bill's provision allowing federal funding to pay for abortions, which is banned under current law.

"What Democrats are proposing today would completely change America's health care system, and not in my view, for the better," Cole said.

The most notable moments in the hearing came when Barkan discussed his own encounters with the health care system and his ALS diagnosis. Barkan said his medical expenses run about $9,000 per month and are not covered by insurance. He has raised money to cover his costs through GoFundMe.

"We should instead have a rational, fair, comprehensive social safety net that actually catches us when we fall," he said.

Barkan documented his journey to Washington over the weekend on Twitter, detailing his passage through security with his mechanized wheelchair, and rallied with fellow progressives from the Center for Popular Democracy on Monday outside the headquarters of Pharmaceutical Research and Manufacturers of America (PhRMA), a major pharmaceutical lobby.

"We will end their profiteering and end their rationing and end their monopolies, because everyone deserves access to medicine. Everyone deserves health care," Darius Gordon, national field organizer for the Center for Popular Democracy, said on behalf of Barkan in a call-and-response speech to the crowd. "Health care is a human right."

Barkan also met with Sen. Bernie Sanders, a Vermont independent and Democratic presidential candidate who has introduced his own version of Medicare for All legislation in the Senate.

Barkan's testimony will represent a sharp break from the position taken by Democratic leaders such as House Speaker Nancy Pelosi, who has argued for focusing on reinforcing Obamacare instead of overhauling the nation's health care system as the Affordable Care Act comes under legal assault by President Donald Trump's administration.

Barkan, who is dying of ALS, was added as a witness amid complaints first reported by HuffPost that the original witness list did not include strong proponents of Medicare for All.

"Ady Barkan has been fighting for many of the principles this Majority believes in for a long time, including the notion that health care is a right and not a privilege," McGovern said in a press release announcing the change last week. "His extraordinary advocacy since his diagnosis has been an inspiration to so many Americans."

Medicare for All legislation was introduced earlier this year in the House by Jayapal of Washington state and Dingell of Michigan. It would roll out the single-payer system over two years, as opposed to the four-year transition envisioned in a similar plan laid out by Sanders.

Jayapal's wide-ranging bill would cover long-term care, prescription drugs, vision and dental care, primary care, hospital visits, maternity care, medical devices as well as abortions. Sanders' bill would also get rid of the ban on federal funding.

Jayapal's legislation does not include details on how to pay for the sweeping proposal. A CBO analysis of single-payer legislation is expected Wednesday.

The House proposal would sunset Medicare and Medicaid but would keep the Indian Health Service and the Department of Veterans Affairs health care system intact.

The single-payer debate has highlighted divides within the Democratic conference. Most freshmen Democrats, many of whom were elected in competitive districts, have not been willing to sign on to the proposal.

"How are we going to pay for it?" Democratic Rep. Lauren Underwood of Illinois asked of Medicare for All in a February interview with CNN. "What happens with private insurance? What happens to all types of coverage?"

Underwood has argued for shoring up the Affordable Care Act instead, a strategy that supporters say is more likely to result in legislation passing through a divided Congress.

Proponents of Medicare for All, such as California Nurses Association board member Sandy Reding, argue that an incremental approach isn't adequate.

"Obamacare was a step in the right direction, but the only thing that's going to cure what ails our health care system right now is Medicare for All," she told CNN at the Monday afternoon rally. "Not incremental changes, not other options. We have to make sure that profits don't continue to be put over people, because capitalizing on the sick and injured is horrible."

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The French solution to US drug prices

My little apartment gave onto a beautiful little garden filled with plants, which unfortunately only intensified my symptoms. My rescue inhaler was the powerful stimulant and bronchodilator epinephrine, and I was using it so frequently that I began to develop heart palpitations. I was pretty scared.

I unburdened myself to my landlords, who pointed out that a new young doctor from Paris had just opened a practice in the village. He took one look at my epinephrine inhaler and shook his head angrily. "That stuff will kill you," he said. Then he pulled out a new, blue inhaler—Ventolin. "Try this," he said. "It's the latest and it won't affect your heart." He wrote a prescription.

It was a miracle. A whole new world opened for me. For the first time in memory, I could breathe freely. I imagined how different my life as an asthmatic child would have been. I went back a week later and told the doctor how well it had worked. He smiled knowingly. But he cautioned I would not find it in the US, as it had not yet been approved by the Food and Drug Administration (FDA).

The active component of Ventolin, salbutamol, became commercially available in Britain in 1969. But the FDA would not approve it for sale in the United States more than a decade, until 1981.

Some New York asthma specialists would drive to Canada, taking out the side panels of their cars to smuggle back the drug for their patients, my regular pulmonologist told me.

I bought enough in France to last me until my next foreign assignment in Southeast Asia for The New York Times. It was early 1975, when I walked into a pharmacy in Bangkok and asked for Ventolin. The pharmacist pointed casually to a shelf where there were piles of them. It was available over the counter—six years before it could be prescribed legally in the United Sates.

The rationale, of course, was that American authorities were simply more cautious, waiting for results from many more tests before releasing most drugs to the public. But the reality was that a vast bureaucracy had grown up and was setting a glacial pace of drug approval, virtually without Congressional guidance.

Matters have improved somewhat since then. Drugs today can go to market with special fast-track procedures that dramatically accelerate the approval process and I am able to find the three asthma drugs that I take every day in many US pharmacies. But the new obstacle is price.

Late last year, I had a rude awakening when I walked into Duane Read on Lexington Avenue in New York and ordered a renewal of my prescription for one of my asthma drugs. The bill? $450 for three months' supply.

That was just the copay. Without a private drug plan, the real cost of my daily medicine Advair would be closer to full retail price of $1,263, or $5,052 for one year.

But that was nothing like my shock upon walking into the tiny pharmacy near the Musée d'Orsay in Paris, a week later. There, a three-month supply for Advair was the equivalent of $125. Had I been a French taxpayer, it could have been free.

The stakes are high for me: Both of my uncles died in their sixties from asthma, more than 20 years ago. I've made it to 74 and am thriving—but I need these drugs to stay alive. So I had to know: How does France keep drug prices so low?

The United States is currently searching its soul about its sky-high local drug prices, highlighted in government hearings over the cost of insulin—a life-or-death treatment for diabetics. As the larger debate over US healthcare veers between advocates of French-style universal health care (known in the US as "Medicare-for-All') and those who want to erase even Obamacare's modest government controls, it's worth taking note of the French system.

The short answer for the drug price disparity is that France has enormous bargaining power with drug manufacturers. The French government runs the country's universal healthcare program, which makes it by far the largest purchaser for most drugs. So when it sets price ceilings for drug-makers; those limits generally hold.

The resulting cheaper prices at the pharmacy don't just make life easier for consumers like me. Lower prices from the outset also mean that France's entire healthcare system carries a lighter financial burden.

Asked about French and US prices for Advair, its maker, global pharma company GlaxoSmithKline attributed the gap to "fundamental differences in healthcare systems and countries around the world [that] make price comparisons very difficult and potentially misleading," spokeswoman Kristen Neese told me in an e-mail.

Neese also warned that French-style centralized price regulation "results in restricted access to medicines and fewer choices for patients."

But the US is one of the world's largest markets for prescription drugs, which makes the government's potential bargaining power enormous. If the US began regulating drug prices—or even ultimately serving as the only real customer under some sort of prescription-drugs-for all plan—it's unlikely that major pharmaceutical companies would risk turning their backs on all those potential sales—even if at lower profits than they're used to.

Bringing the US government's negotiating power to bear on drug prices would be a huge first step in helping people who don't have the kind of health insurance that make my lifestyle possible.

But it doesn't have to start in Washington, DC.

A major private entity could step in as well—imagine the possibilities if Amazon, with its recent purchase of PillPack, decided to use the full force of its negotiating power for the benefit of its 100 million Prime members.

Doesn't US President Donald Trump love negotiations where he has the upper hand? And surely Jeff Bezos?

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