The operations of these groups often dovetail with work by corporate lobbying shops. Most, but not all, disclose industry funding sources on their websites.
Some of the more active groups are the Alliance for Patient Access and Patients Rising. Those names make it hard for people to understand their ties to industry, consumer advocates say. The Alliance for Patient Access has launched digital and radio advertisements in recent weeks opposing the Trump administration’s plans to cut Medicare reimbursement for drugs administered in hospitals and doctor’s offices. Patients Rising has a strong presence on social media.
“Sometimes it’s hard to figure out, ‘Is this real, or this is a tool of the people who make money on drugs?’ ” said David Mitchell, a multiple-myeloma patient who is executive director of a consumer advocacy group called Patients for Affordable Drugs, which supports Medicare price negotiations.
Not all of these groups conduct their operations in a spirit of transparency. A website launched in December by a group called Citizens for American Ideas criticizes Democrats’ plans to curb drug costs in Medicare. The message also is being driven by mailings to the residences of individual voters in congressional districts, warning proposed changes would trash the U.S. patent system and make it more like “Russia or Brazil.’’
“We must protect innovation and the development of new treatments and cures, and that means protecting patents,’’ the form letter states.
But the group has murky origins. It has taken steps to remain anonymous, even as it publicly rails against efforts in Congress to lower drug prices and urges voters to directly contact lawmakers. Its website was formed using an Internet service that conceals the actual owner.
The physical address for the group leads to another dead end: It’s a UPS retail store in Washington with post-office boxes just a few steps from K Street NW. The organization does not show up in a search of the Internal Revenue Service’s online database of tax-exempt organizations.
Lobbyists and lawmakers who have reviewed the group’s activities say Citizens for American Ideas is the latest example of a corporate lobbying “ghost ship,’’ a term of art for a corporate advocacy operation that is meant to remain anonymous. It could have been launched by any one of the hundreds of lobbying shops in downtown Washington, lawmakers say.
“It’s clearly a fake organization,” said Rep. Lloyd Doggett (D-Tex.), a member of the House Ways and Means Committee.
Doggett is sponsor of a bill championed by Democrats that would allow Medicare to negotiate the price of drugs. It also would allow the government to license a generic drug if prices spiked too high on brand-name drugs regardless of patent expiration date, what is known as “compulsory licensing.’’
The opposition of Citizens for American Ideas to Medicare drug-price negotiating is shared by the two largest prescription-drug lobbying groups — the Biotechnology Innovation Organization (BIO) and the Pharmaceutical Research and Manufacturers of America (PhRMA). Both said they had no ties to Citizens for American Ideas and did not know who started it.
“We are simply not familiar with this group. We are not affiliated with it nor do we provide funding for it,’’ said Brian Newell, a spokesman for BIO.
Despite the group’s murky profile, Democratic lawmakers said it was not hard to deduce the motivations of whoever is behind the organization.
Rep. Jan Schakowsky (D-Ill.), who has pushed legislation allowing Medicare to negotiate for lower drug prices, said pharmaceutical lobbying groups “are absolutely doing everything they can’’ to thwart curbs on drug pricing. “They give a lot of money to members of Congress and spend a lot of money influencing providers and even try to buy off disease groups through contributions.”
One center-left think tank has been drawn into the battle over Citizens for American Ideas against its will. An article defending the patent system against compulsory licensing that was penned by a Third Way scholar was lifted from Third Way’s website and appears, without authorization, on the Citizens for American Ideas website. Matt Bennett, the group’s executive vice president for public affairs, said he had no idea who runs the site. Third Way’s requests on an online contact form to remove the article have not been answered, he said.
“It’s a form of advocacy we don’t like,’’ he said of the anonymous site. “I think it’s ridiculous, and we were very unhappy to see our stuff on there. No one asked us.’’
The Citizens for American Ideas website also displayed an article by former Vermont governor, presidential candidate and Democratic National Committee chairman Howard Dean. Dean indicated he also did not give permission for his writing to appear on the site.
“I don’t believe I have ever heard of this group,’’ Dean said in an email.
The Citizens for American Ideas initiative is the most extreme example of a front group’s activities. Alliance for Patient Access and Patients Rising do not have formal affiliations with the pharmaceutical industry’s largest trade organizations in Washington. Such groups are commonly called “AstroTurf’’ groups by critics who claim they are masquerading as grass-roots organizations.
On their websites, the Alliance for Patient Access and Patients Rising list large drug companies among their supporters. The alliance does not disclose funding levels, while Patients Rising does list funding ranges.
The Alliance for Patient Access (AfPA), which is led by physicians, lists PhRMA and BIO among its three dozen “associate members and financial supporters.’’
“AfPA advocates in defense of the physician-patient relationship to ensure patients can access the medicines their health care providers prescribe,” the group said in an email.
The consumer advocacy group Public Citizen took aim last week at a broad array of patient groups’ industry backing.
It released a survey of signatories to a letter to Congress protesting legislation to allow Medicare to negotiate drug prices. Of the 120 patient organizations that signed, a little more than half received financial support from prescription drug manufacturers, Public Citizen said in a news release.
“Big Pharma has a long history of manipulating this debate,’’ said Peter Maybarduk, director of Public Citizen’s Access to Medicines Program.
Third Way withdrew its support from the letter Friday, even though it shares the view that Medicare should not negotiate drug prices. It said its decision to participate in the letter was overturned by senior staff.
“We don’t want to be on letters where we don’t generate the content. We’re a think tank,’’ Bennett said.
A relative newcomer in the skirmishing over front groups is the Alliance to Protect Medical Innovation, which formed last year in direct response to the campaign by Patients for Affordable Drugs — the consumer group that advocates for price controls and that itself has big-donor backing, with big grants from the charitable foundation of Texas billionaire John Arnold.
“We have never hidden the fact that we are funded by the biopharmaceutical industry or that we launched to push back on the distortions and false claims peddled by Patients for Affordable Drugs and its web of affiliated organizations,” said Patrick O’Connor, APMI’s executive director and a partner at lobby shop CGCN Group, on K Street.
BIO has acknowledged that it supports APMI; O’Connor said he plans to release a list of its supporting corporate members but that timing remained unclear. Mitchell said such groups should be required by law to reveal their advocacy funding.
He cited CGCN’s lack of disclosure thus far: “They live in a lobby shop.’’
Correction: An earlier version of this story incorrectly described Patients Rising disclosure practices for industry funding. This version has been corrected.