Over the past two years the Laura and John Arnold Foundation has spent $56 million grooming a handful of academics, interest groups and media outlets for the job of deciding who gets access to what medicines. In particular, LJAF gave $3 million to Kaiser Health News to report on pharmaceutical pricing. As a recent article in STAT revealed, KHN -- whose articles are syndicated widely by the Washington Post, USA Today and other news sources -- has no problem running articles that cite or cover the other groups who received the remaining LJAF $40 million. And it has no problem doing so with acknowledging that KHN and its sources both get funding from LJAF or that it runs articles that fit the LJAF agenda.
So why would it break an ethical sweat when producing, "Pre$cription For Power" (Get it?): Investigating the relationships between patient advocacy groups and Big Pharma." As deliberately misleading hit jobs on patient groups go, this latest KHN piece reaches a new low.
Here's Kaiser's (mis)leading question: "Patient advocacy groups campaign to raise awareness of diseases, to fund research and to promote policies favorable to their causes on Capitol Hill and at the Food and Drug Administration. But do they represent patients or Big Pharma?"
Note that KHN ignores another important patient group function: providing patients and their families with counseling, referral services and financial support for expenses not covered by insurance. Also note that most patient advocacy group, including those listed by KHN, have neither the need or resources to "promote policies favorable to their causes on Capitol Hill and at the Food and Drug Administration".
All the better to make the following slimy insinuation: "Some drugmakers gave seven-figure donations to patient advocacy groups whose communities depend on blockbuster medicines made by those companies. This relationship could inhibit patient advocates from calling for lower drug prices, watchdogs say."
So KHN, without any evidence of a quid or a pro quo, alleges that patient groups do not call for lower drug prices or more precisely, do not call for policies to lower drug prices supported by groups funded by the Arnold Foundaiton,
The goal of is to silence these organizations through collective guilt. But both the math and methods miss the mark. Which is typical of much of the Arnold funded material.
First, nearly 90 percent of the funding that KHN claims is real pharma influence buying goes to paying for the out of pocket costs of medicines charged by PBMs and health plans despite receiving billions in rebates. LJAF opposes programs that provide patients discount coupons or copay assistance to help patients pay for those medicines that are not favored by PBMs. So do most of the LJAF funded groups that KHN crowns as "watchdogs." But you wouldn't know that since KHN has stated it is under no obligation to disclose if their funder is advancing a specific agenda.
Rather, KHN claims that it "decided to include drug copay assistance groups as patient advocacy groups, based on reporting about these groups. "
Based on what reporting?
Certainly not KHN reporting. A google search of Kaiser Health News articles on copay assistance groups reveals a series of articles that are fairly objective and if not favorable at least note that such groups are a necessary workaround to Medicare law and a response to formulary practices. At least until 2017, which is when KHN was using LJAF money to report on drug prices.
KHN claims that patient assistance groups are really lobbying on behalf of pharma and not calling for price controls because, "some copay groups have faced criminal probes based on allegations that they help drug companies skirt anti-kickback statutes that prohibit copay assistance to Medicare and Medicaid patients, according to investigators with the U.S. Attorney’s Office for the District of Massachusetts and the Justice Department."
This last statement is barely true and mostly bullshit.
Patient assistance programs (PAPs) "provide financial assistance to patients in a variety of forms, including free or discounted products, product coupons, and copayment assistance, to provide assistance to patients with limited financial means. These programs are generally administered through independent charitable organizations or by foundations established by medical product manufacturers. The U.S. Department of Health and Human Services (“HHS”) Office of the Inspector General (“OIG”) has continually acknowledged that properly structured PAPs can provide important “safety net assistance” to patients with limited financial means who cannot afford necessary drugs."
Moreover, the articles KHN links to in defense of defining such groups as advocacy entities mention only one patient assistance organization has been involved in a Justice Dept. investigation of a pharma company. Not one of the patient assistantance programs listed by KHN has "faced a criminal probe" let alone been caught up in one because of what drug companies do. Only one group, Patient Services, Inc., was "contacted in a connection with a federal investigation into drugmakers' financial support of non-profits like itself. " The focus of every investigation is whether or not companies are using charities to cover the cost of their medicines only. NONE have been accused of violating a federal law because of their participation.
KHN falsely maligns charities to support their flimsy claim that they are pharma pawns and therefore should be included in the amount it has tracked. If we accept their argument it turns out that of the $116 million pharma companies have provided, 51 percent or $59 million of that amount goes to 6 patient assistance groups identified by KHN. And these groups are not allowed to use donations for patient assistance for lobbying.
As for the other groups blacklisted by KHN, the average donation to patient organizations is $98400K. The top 20 recipients receive an average of $1.7 million each. But nearly all of these groups devote most of their time, money and resources to sponsoring research or providing patients and their families social services and referrals. Nevertheless, of that top 20 nearly all have taken action or made statements in support of lower drug prices. For instance, the American Diabetes Association has launched a grass root campaign because, as it notes, "the cost of insulin is increasing at an alarming rate. It's time for change. More than 308,422 people have joined the American Diabetes Association in calling for action." The American Heart Association has developed a program to identify drugs with the most value per dollar. The American Cancer Society has continually criticized high drug prices. The same goes for the Elton John AIDS Fund, the International Myeloma Foundation and the Leukemia and Lymphoma Society. There are others, but you get the idea.
To be sure, these groups are not advocating against high drug prices full time. There are many groups doing so. Nearly all of them are funded by LJAF. And every LJAF funded group is involved in developing, advocating, publishing and promoting the LJAF agenda: government price controls, longer and more expensive clinical trials for new drugs for rare diseaese, government seizure of pharmaceutical patents and using LJAF funded groups such as ICER to determine which drugs are worth paying for.
LJAF provides 14 nonprofit or academic institutions $47 million for activities relating to these issues.
LJAF provides 3 media outlets, HealthNewsReview.Org, Propublica and KHN $8.1 million to report on the activities and quote the experts receiving the $47 million.
LJAF provides one group, Patients for Affordable Drugs about $500k for its nonprofit advocacy of price controls, patent seizures and adoption of ICER guidelines and an estimated $10 million to a PAC that will run TV ads attacking drug prices that is also operated by the same group leading Patients for Affordable Drugs.
Every one of these LJAF funded groups works full time on advancing and implementing an agenda set by LJAF.
None of them lift a finger to help a patient in need of financial or emotional support, or fight to help patients get the medicines their doctors think they need. None spends one dime on research that had lead to breakthroughs as has the Multiple Myeloma Research Foundation, the Cystic Fibrosis Foundation or the National Psoriasis Foundation.
Ultimately, the KHN piece is part of a sustained effort to silence patient groups and increase the influence of LJAF funded organizations.
Years ago, PBS returned a grant from LJAF underwriting a series on public sector pension reform after it was revealed LJAF was also funding other organizations to advance its agenda. Back then, it was PBS ultimately determined that the LJAF grant flunked PBS’s “perception test” guidelines (that) prohibit accepting funding for public affairs programs if “there exists a clear and direct connection” between the interests of a proposed funder and the program’s subject matter, even if the funder has no editorial control.
That same sense of decency or journalistic integrity no longer exists at KHN. Rather, KHN has pimped itself out to silence any groups that might pose a threat to the imagined power of its paymasters.