Jayne O'Donnell, and Fernanda Crescente

USA TODAY

Groups that advocate for patients' and doctors' interests are working in near lockstep with the big pharmaceutical companies that fund the groups to fight a proposed Medicare rule that could affect the companies' bottom lines, documents and interviews show.

At stake is a Centers for Medicare and Medicaid Services proposal to test the effect of cutting what doctors get from Medicare for administering high-priced infusion drugs.

The language used by the physician trade group Community Oncology Alliance (COA) and the Pharmaceutical Research and Manufacturers Association (PhRMA) to oppose the rule is nearly identical in parts. And the points made by patient groups funded by drugmakers that oppose the project track closely with the doctors' and industry's.

The key issue is the independence of the groups that claim they represent the interests of patients, while they simultaneously get much of their financial support from companies dependent on the continued flow of federal money. The groups are also targeting two senators who have been outspoken about the lack of transparency on drug maker funding of physicians and groups that represent them and patients.

The Medicare project could also reduce the amount of money cancer and other patients would have to pay for the infusions, according to testimony by Joe Baker, president of the Medicare Rights Center, which operates a government-funded consumer hotline. Baker told the House Energy and Commerce Committee in May that "sky-high cost sharing for Part B prescription drugs is a notable concern, most often for cancer and immunosuppressant medications." He said up to 14% of Medicare patients don't have supplemental insurance that covers their co-payments,

The so-called Medicare Part B demonstration project is the latest, and one of the best organized, fight the pharmaceutical industry has waged with the help of patient and doctor groups. The patient groups are often non-profit charities that provide insurance co-payment assistance, but many aren't involved in co-pays and some aren't even non-profits.

"I keep hearing about doctors' offices under water," says Heather Block, a Stage IV breast cancer patient who testified on Capitol Hill in May about the project. "Patients are the ones paying for this now. I think it’s propaganda."

If it is, it's spreading.

COA's public comments on the Medicare project included some near-identical phrases and passages from talking points obtained by USA TODAY that PhRMA gave the groups it supports right before the Part B comments were due.

PhRMA talking points

PhRMA is one of COA's corporate members, along with nearly 40 drug companies.

"We have a very strict policy in terms of the demarcation of what a corporate member is at COA and what we do," says COA Executive Director Ted Okon. "We don’t do anything promotional or anything like that."

Yet COA comments say the proposal “would raise several constitutional concerns.” PhRMA’s talking points are a very condensed version of its 45-page comments, which repeatedly say the project raises constitutional concerns. COA’s comments also say it "would cover beneficiaries in approximately 75% of the country who take a Part B drug.” Similarly, PhRMA’s say “it would cover Medicare beneficiaries in 75% of the country taking nearly any Part B drugs.”

PhRMA released its comments May 6, three days before COA, which submitted them May 9, the day they were due.

Patient groups funded by drugmakers are largely mum on high drug prices

"We disseminated specific concerns to many audiences including the press," says PhRMA spokesman Robert Zirkelbach. "We have a lot of back and forth dialogue with a number of stakeholders."

"We came out with the first talking points," Okon says. "For all I know, PhRMA looked at our talking points."

COA did send a letter to CMS on March 9, but PhRMA did not make the same points or use the same language.

Questions about transparency

The founders of another group, Patients Rising, have blogged about their "good friends" at COA's position on the Part B proposal and, on June 22, it was among 26 doctor and patient groups including COA that co-signed a letter to Sen. Charles Grassley, R-Iowa, urging him to oppose the CMS proposal. Patients Rising is a non-profit funded by PhRMA and the drugmakers Celgene and Amgen that was started last summer to "stand up for patients," according to its website.

In 2011, Grassley urged groups representing patients or doctors to disclose who funds them and what the money is used for, noting "there’s a strong case for disclosure and the accountability that results."

"These organizations have a lot of influence over the way taxpayer dollars are spent," wrote Grassley. "They work to sway the legislative debates in Congress, and government agencies such as the Food and Drug Administration and the Centers for Medicare and Medicaid Services rely on guidance from the organizations in writing rules and regulations and determining how public dollars are spent.”

Jonathan Wilcox, co-founder of Patients Rising, told CNBC last month that, while costs are a concern, "patients and their medicines are the last place we should be cutting,"

Wilcox declined to say the percentage or amount of contributions he gets from industry or to name any of the others in his "wide range of support." He invited an inspection of his one car and small "rented house to measure what the tremendous financial rewards have been" running the group.

COA's Okon says his group is "as transparent as we could possible be," but he declined to say how much money his group gets from corporations.

COA board member and Texas oncologist Debra Patt, who was also testifying at the Energy and Commerce Committee hearing, earned $120,000 last year from drug companies for research, according to CMS' Open Payments database.

Officials from two other groups, the Coalition for State Rheumatology Organizations and the Immune Deficiency Foundation (IDF), submitted written testimony that was identical in parts. A spokesperson said it was a mistake.

IDF receives 70% of its funding from industry and 60% from drug companies specifically, spokeswoman Kara Moran said.

Report: Federally funded institute avoids comparing drugs, other treatments

A lobbying firm's reach

While many industries fund purported grass-roots groups in what's known as astroturfing, critics say it's especially troubling at a time when research shows Americans want Congress and the White House to do something about high drug prices.

The most notable of these when it comes to drug prices is the Partnership to Improve Patient Care, which is chaired by former representative Tony Coelho, D-Calif. PIPC's steering committee includes PhRMA, Easter Seals and several industry groups.

Sara van Geertruyden, PIPC's executive director, is also a partner in Thorn Run Partners, a lobbying and public affairs firm that counts PIPC and many drug companies as clients and hires other firms to lobby on comparative effectiveness research. Unlike most groups that say they represent patients, PIPC is neither a non-profit nor a separate legal entity from the lobbying firm.

Thorn Run's lobbying clients also include the drug company-funded patient group Patient Services Inc., according to the Center for Responsive Politics. PSI's close relationship with Turing Pharmaceuticals, best known for its indicted former CEO Martin Shkreli and massive price increases last year, was detailed in a May story by Bloomberg.

Coelho wouldn't say how much of PIPC's money comes from drugmakers and said that no one in his 50 years in Washington has questioned his integrity. He resigned from Congress in 1989 as he faced expected congressional and Justice Department investigations into his failure to report junk bond purchases with loans from a friend who was a savings-and-loan official.

Nearly 90 groups, including many drug company-funded patient groups, co-signed PIPC's federal comments opposing the Medicare proposal. Late last month PIPC also sent a letter co-signed by 32 patient groups opposing the Medicare project to Senate Finance Committee Chairman Orrin Hatch, R-Utah, and ranking member Sen. Ron Wyden, D-Ore. The letter used strikingly similar language as PhRMA's comments and talking points. Wyden successfully fought to get two doctors with strong drug industry ties removed from a federal advisory panel on opioid abuse last week.

Debra Whitman, chief public policy officer for AARP, which represents people over age 50, says AARP strongly supports "transparency for provider and patient advocacy groups that receive financial backing from pharmaceutical companies" to ensure policymakers receive unbiased information.

"A recent study indicated that doctors’ behavior can be affected by something as simple as an inexpensive meal from a pharmaceutical company representative," Whitman said. "Imagine the influence that comes with contributions in the tens to hundreds of thousands of dollars.”

A report out Monday from Public Citizen found House members who signed letters to CMS opposing the Medicare projects had 82% more drug company contributions than those who did not.

AARP was one of 27 groups, including several unions and left-leaning interest groups, that wrote to members of the Senate Finance Committee last month in support of the Medicare project.

Writing about the Medicare project on the Patients Rising blog, Wilcox's wife and co-founder Terry Wilcox noted, "Thankfully, patients and health providers are uniting against the proposed changes."

Block says she's more worried about going bankrupt than dying from her cancer. And as a patient involved in the drug price debate who isn't getting money from the drug companies, she says, "I’m one of the only people who can out anybody."