Representing patients’ voices

Representing patients’ voices
© Greg Nash

It’s arguable that no one wanted to see New Jersey Senate candidate Bob Hugin (R) lose his midterm race more than David Mitchell.

For Mitchell, a cancer patient and 30-year veteran of public policy who founded the advocacy group Patients for Affordable Drugs, the fight was personal.

Hugin served as a top executive for Celgene when it raised by 34 percent the price of a drug Mitchell took for five years for his blood cancer. His co-pay jumped by 600 percent.

When Hugin retired from the company early this year and launched a challenge to embattled Sen. Bob MenendezRobert (Bob) MenendezMore oversight of America’s international media networks a good idea Pro-Israel organizations should finally seek payback against Iran deal Dems Trump lowers refugee goal to 30,000, he must meet it MORE (D-N.J.), Mitchell knew he had to do something.

“He is a personification of everything wrong with the drug pricing system in America, and I couldn’t let a former Big Pharma CEO go to the Senate,” Mitchell told The Hill in a recent interview.

Hugin became the first target of Patients for Affordable Drugs Action, the group’s political arm.

The group spent $3.5 million on ads against Hugin — just a fraction of all spending in the hotly contested race, but money Mitchell said was critical to informing New Jersey voters about the Republican’s record.

“I needed to do everything in my power, personally, to stop Bob Hugin from going to the United States Senate. It was a mission,” he said.

Menendez ultimately defeated Hugin to win reelection earlier this month.

Mitchell was diagnosed in 2010 with a rare, incurable blood cancer called multiple myeloma that weakens the bones.

He recalled how on Halloween that year he got out of bed and fell to the floor, unable to walk.

He was informed that the cancer had literally broken his back by eating through his vertebrae.

His doctors were able to repair it with a “miracle” surgery that only works about half of the time, but he lost two inches of height.

“I was already short, and now I’m really short,” he quipped recently as a nurse prepped his body for cancer treatment.

While multiple myeloma is incurable, it is treatable. Mitchell visits a facility in Bethesda, Md., once a month.

Mitchell will need the treatment for the rest of his life, and he is on his second line of it since Celgene’s drug, Revlimid, stopped working for him.

The two drugs he takes now, daratumumab and bortezomib, keep him from experiencing any cancer symptoms. They also cost $450,000 a year.

While Medicare picks up most of the tab, he said, “Having this disease and to be reliant on these very expensive drugs to literally keep me alive brought me face-to-face with the fundamental point that drugs don’t work if people can’t afford them.”

As a 30-year veteran in public policy, he became “more and more frustrated” that there were not groups representing patients’ voices in the drug-pricing debate that didn’t accept money from the drug industry.

“In early summer of 2016, I woke up and had an epiphany: Maybe I could do this,” he said. Mitchell launched Patients for Affordable Drugs with the goal of elevating patients’ stories and voices to policymakers and decisionmakers within the administration.

The group has collected thousands of stories from people across the country suffering under high drug costs.

He credits his small staff for the group’s work, including Executive Director Ben Wakana, a former Health and Human Services spokesman in the Obama administration.

“Our job is to ensure that when policy is written, it’s not written only by the people who profit from our current system, but by the people who the current system is supposed to serve,” Mitchell said.

“When I talk to patients and they say, ‘thank you for giving us a way to speak to our elected officials directly,’ that’s what I’m proudest of,” he said.

Mitchell said he works for free and he and his wife, Nicole, have contributed their own money to the organization. The group is largely funded by the Laura and John Arnold Foundation, which awarded a $1 million grant to it last year.

Mitchell, 67, grew up in Detroit and worked at United Auto Workers for eight years before spending three decades at the consulting firm GMMB working mostly on public health policy.

While a consultant, he helped invent “Click It or Ticket,” an education and enforcement initiative widely credited with increasing seat belt use in the U.S. He also worked to pass clean indoor laws to reduce exposure to secondhand smoke.

“In order to do all of that, it required a strategy that included federal action and state action that altered laws and approaches,” he said, adding that his current work builds on that experience.

Patients for Affordable Drugs Action, also known as P4AD Action, got involved in more than just New Jersey’s Senate race this year.

The group spent $10 million in the midterm elections, but it has received scrutiny for focusing on some races that were not competitive.

The PAC targeted Rep. Anna EshooAnna Georges EshooRepresenting patients’ voices Dem lawmaker: 'There's plenty of competent females' that can be Speaker instead of Pelosi Heritage: Repealing GOP tax law would raise taxes in every district MORE (D-Calif.), who the group says has taken more money from the pharmaceutical industry than any other House lawmaker.

Eshoo easily won reelection and next year is likely to chair the House Energy and Commerce subcommittee on health, which has large jurisdiction over drug-pricing legislation.

“That might come back to bite us. I’m being very honest,” Mitchell said.

“It could very well be that we’ll never have another relationship with Anna Eshoo or her staff ever again, and we’ll be the bad cop forever. If Anna Eshoo moves to support meaningful reforms to lower drug prices in this country, we’ll stand up and applaud and say ‘thank you Congresswoman Eshoo.’ ”

P4AD Action also angered Democrats by going after Sen. Tom CarperThomas (Tom) Richard CarperOvernight Energy: Trump adviser Kudlow seeks end to electric car, renewable energy credits | Shell to pay execs based on carbon reduction | Justices reject greens' border wall lawsuit Representing patients’ voices Overnight Health Care: Top Trump refugee official taking new HHS job | Tom Price joins new Georgia governor's transition | FDA tobacco crackdown draws ire from the right MORE (Del.), another Democrat who wasn’t in a competitive reelection race but, they argue, is aligned with pharmaceutical companies. Carper was in a competitive primary that he ended up winning easily.

“We were trying to send a message to people in Congress: If you take their money, do their bidding and stop drug prices from coming down, there’s a price to pay, and we’re going to expose you,” Mitchell said.

The PAC also supported Republicans in safe races who they said have been supportive of drug-pricing reform: Reps. Francis RooneyLaurence (Francis) Francis RooneyMeet the lawmakers putting politics aside to save our climate Bipartisan group of lawmakers propose landmark carbon tax Overnight Defense: Trump says he may cancel G-20 meeting with Putin | Three service members killed in Afghanistan | Active-shooter drill sparks panic at Walter Reed MORE (Fla.) and David McKinleyDavid Bennett McKinleyRepresenting patients’ voices Super PACs spend big in high-stakes midterms Twitter chief faces GOP anger over bias at hearing MORE (W.Va.).

But it also waded into competitive races, spending money in opposition of Reps. Pete SessionsPeter Anderson SessionsAdvocates see state legislatures as next frontier for pot legalization GOP struggles to find right Republican for Rules The Hill’s 12:30 Report — Presented by The Embassy of the United Arab Emirates — Trump says Cohen should go to jail | Nation prepares for Bush 41 funeral | Congress delays votes MORE (R-Texas) and Bruce PoliquinBruce Lee Poliquin5 themes to watch for in 2020 fight for House Maine’s 2nd District outcome proves value of ranked choice voting Losing GOP rep wants new election if results aren't overturned MORE (R-Maine), who lost, while supporting Sen. Claire McCaskillClaire Conner McCaskillMissouri GOP Secretary of State launches investigation into Hawley’s time as AG The Hill's Morning Report — Presented by T-Mobile — Congress to act soon to avoid shutdown Schumer gets ready to go on the offensive MORE (D-Mo.), who was defeated.

P4AD Action is already looking to the next Congress, where Democrats will control the House.

The group supports Medicare drug-price negotiation but recognizes it’s unlikely to pass while Republicans control the Senate.

Mitchell is optimistic that Democrats, the Republican Senate majority and President TrumpDonald John TrumpCorsi sues Mueller for alleged leaks and illegal surveillance Comey: Trump 'certainly close' to being unindicted co-conspirator Trump pushes back on reports that Ayers was first pick for chief of staff MORE can compromise, particularly on the Creates Act, a bipartisan bill that aims to help bring lower cost generics to the market.

But both of those policies are vehemently opposed by the pharmaceutical industry, led by the trade group PhRMA, which spent a record amount on lobbying last year to block the Creates Act and other unfriendly measures in Congress.

Mitchell insists that while his group cannot match PhRMA on spending, “We can deliver something they can’t: the voices of patients demanding change, demanding reforms, demanding relief.

“If we just looked at resources, we would just stay home.”