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) MenendezSenate to vote on blocking Trump's Saudi arms deal as soon as this week There is a severe physician shortage and it will only worsen Democrats ask Fed to probe Trump's Deutsche Bank ties 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 EshooPro-trade group targets Democratic leadership in push for new NAFTA House Democrats press leaders to start Trump impeachment Hillicon Valley: Court rejects Chelsea Manning appeal | Facebook hires lawyer who helped write Patriot Act | Senator seeks details on Russian interference in Florida | Amazon hiring alcohol lobbyist | Ex-Obama aide lobbying for Sprint, T-Mobile merger 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 Defense: House passes T spending package with defense funds | Senate set to vote on blocking Saudi arms sales | UN nominee defends climate change record Overnight Defense: House passes T spending package with defense funds | Senate set to vote on blocking Saudi arms sales | UN nominee defends climate change record Bipartisan senators propose forcing EPA to set drinking water standard for 'forever chemicals' 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 RooneyAddressing climate change is a win for Republicans — why not embrace it? Pricing carbon: A solution whose time has finally come Activists push for tougher sanctions on Nicaragua's government MORE (Fla.) and David McKinleyDavid Bennett McKinleyBipartisan former EPA chiefs say Trump administration has abandoned agency's mission Bipartisan former EPA chiefs say Trump administration has abandoned agency's mission Thirty-four GOP members buck Trump on disaster bill MORE (W.Va.).

But it also waded into competitive races, spending money in opposition of Reps. Pete SessionsPeter Anderson SessionsHillicon Valley — Presented by CTIA and America's wireless industry — Lawmaker sees political payback in fight over 'deepfakes' measure | Tech giants to testify at hearing on 'censorship' claims | Google pulls the plug on AI council Lawmaker alleges political payback in failed 'deepfakes' measure As Russia collusion fades, Ukrainian plot to help Clinton emerges MORE (R-Texas) and Bruce PoliquinBruce Lee PoliquinMaking the case for ranked-choice voting Making the case for ranked-choice voting The 31 Trump districts that will determine the next House majority MORE (R-Maine), who lost, while supporting Sen. Claire McCaskillClaire Conner McCaskillConservatives spark threat of bloody GOP primaries Congress needs to work to combat the poverty, abuse and neglect issues that children face Lobbying world 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 TrumpBooker hits Biden's defense of remarks about segregationist senators: 'He's better than this' Booker hits Biden's defense of remarks about segregationist senators: 'He's better than this' Trump says Democrats are handing out subpoenas 'like they're cookies' 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.”