On Tuesday, Planned Parenthood Federation of America (PPFA) sent a letter to the National Institutes of Health (NIH) stating that its affiliates would no longer request reimbursement for donation of fetal tissue, instead covering the costs of preserving and transferring the tissues on its own. The move comes after months of attacks on PPFA and its affiliates resulting from a series of deceptively edited videos claiming that affiliates were profiting from collection and donation of fetal tissue for research.
The claims have never been backed up: No evidence to support these allegations has ever been presented by the producers of the videos or the congressional Republicans now using them to attack Planned Parenthood.
PPFA sees the decision to forgo reimbursement altogether as a strategic move intended to expose the real intentions of those seeking to ban safe abortion care in the United States. There are more than three million people who receive reproductive health care each year from PPFA, and efforts to weaken the organization will only undermine public health and cost us more in the long run.
Not everyone is happy about the decision, however.
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Collecting, donating, and accepting reimbursement for the costs of transferring fetal tissue from clinics to labs is completely legal; realizing profits from such donations is not. Fetal tissue donations are regulated by a law passed in 1993, which in turn was based on the findings of a panel appointed by former President Ronald Reagan. Fetal tissue is and has long been used in a variety of medical and public health research efforts, ranging from development of vaccines to the search for treatment of a wide range of debilitating and potentially life-threatening conditions including but not limited to Parkinson’s disease, Alzheimer’s disease, Down syndrome, leukemia, immunologic disorders, diabetes, and maternal and infant health conditions. What PPFA and other providers offering patients the option of donating fetal tissue do is essential to public health research.
It is also a widely employed public health strategy. According to Dr. David Grimes, former chief of the Abortion Surveillance branch at the Centers for Disease Control and Prevention, “being compensated for administrative costs associated with fetal tissue collection is analogous to the American Red Cross getting compensated for the collection, storage, and transportation of blood products.”
The original claims against PPFA came from a previously unknown anti-choice group calling itself the Center for Medical Progress (CMP) and were based on a series of videos recorded surreptitiously and taken by people operating under false pretenses using false identities. Apart from asserting that PPFA was selling fetal tissue, CMP also either misinterpreted or misled the public and the media on various aspects of the law governing fetal tissue collection, alleging, for example, that PPFA doctors were “changing methods” to collect more tissue. But the provision of the law governing methods applied only to organ collection for now-discontinued transplant research, and never to the clinical care provided by reproductive health providers like PPFA. So there was effectively no law to break—nor any evidence that PPFA ever did so anyway. In its letter to NIH, PPFA states that its own internal policies and practices have always adhered to all portions of the law, even those that do not apply to its work. In other words, PPFA voluntarily went above and beyond standing law.
CMP is closely affiliated with other radical anti-choice groups such as Operation Rescue and Live Action films. CMP is now under investigation in California for possibly breaking the law. Meanwhile, as noted earlier and worth repeating, no evidence of wrongdoing by PPFA has ever been presented. The absence of evidence notwithstanding, congressional Republicans are conducting what are clearly viciously partisan hearings, another in a long series of efforts to eliminate access to reproductive health care for low-income people under Medicaid and Title X, the programs through which PPFA receives government reimbursement of funding for providing care.
In short, we’ve seen this movie many times before, and this is a tired but still dangerous sequel. Radical anti-choicers and their counterparts in Congress and state legislatures continue to use these unproven allegations in their quest to marginalize and destroy a provider that provides high-quality primary reproductive health care to more than three million Americans per year. Five Planned Parenthood clinics in two states offer fetal tissue donation to their patients; one clinic did not accept reimbursements in the first place. Yet seven states have wasted time and money investigating claims by CMP—Florida, Georgia, Massachusetts, Missouri, Pennsylvania, Indiana, and South Dakota—even though no PP clinics in any of these states collect or donate fetal tissue. A number of other states have rushed to ban fetal tissue research irrespective of the costs to public health.
In its letter to NIH, PPFA states that it will continue to provide people the option of donating fetal tissue while absorbing the costs of preserving and transferring the tissue itself. Cecile Richards, president of PPFA, wrote:
The participation by a handful of our affiliates in supporting women who choose to make fetal tissue donation has always been about nothing other than honoring the desire of those women and contributing to life-saving research and cures. In order to completely debunk the disingenuous argument that our opponents have been using – and to reveal the true political purpose of these attacks – our Federation has decided, going forward, that any Planned Parenthood health center that is involved in donating tissue after an abortion for medical research will follow the model already in place at one of our two affiliates currently facilitating donations for fetal tissue research. That affiliate accepts no reimbursement for its reasonable expenses – even though reimbursement is fully permitted under the 1993 law. Going forward, all of our health centers will follow the same policy, even if it means they will not recover reimbursements permitted by the 1993 law.
The letter continues:
[O]ur decision not to take any reimbursement for expenses should not be interpreted as a suggestion that anyone else should not take reimbursement or that the law in this area isn’t strong. Our decision is first and foremost about preserving the ability of our patients to donate tissue, and to expose our opponents’ false charges about this limited but important work.
In a phone call with Rewire, Eric Ferrero, vice president of communications at PPFA, said the decision was intended to “take away the smoke screen that anti-abortion activists are using to justify all these attacks, and in so doing lay bare their actual agenda.”
“We have known all along this is not about fetal tissue,” he continued. “It’s about banning abortion in this country. We are essentially calling their bluff.”
Ferrero reiterated points made in the letter to NIH that “PPFA stands behind fetal tissue research, we are proud of this work, and nothing about our decision to change our policy should be interpreted to suggest that others should not be reimbursed. The law allows for it, medical standards allow for it, other health-care providers do it, and it is totally appropriate.”
PPFA’s strategic calculation is that the decision not to accept reimbursement for fetal tissue immediately calls into question the legitimacy of both CMP and members of Congress who are using the fetal tissue charges to attack women’s health care. PPFA also is talking over the heads of Congress, so to speak, to reach the public; polls show consistently high levels of support for PPFA, and as Ferrero noted, the thinking is that once you take out the fetal tissue piece you uncover the real motivations.
Not surprisingly, this step did not change the minds of those who attacked PPFA in the first place. David Daleiden, the head of CMP, called it an “admission of guilt,” though of what it isn’t clear, since reimbursement for fetal tissue samples is completely legal, and, again, as noted above, no evidence exists whatsoever of wrongdoing in the first place.
Concerns about the new policy have been raised, however, by independent providers. Several providers agreed to speak to Rewire, all of whom requested anonymity to avoid becoming the focal point of an ever-emboldened and increasingly violent anti-choice movement. “Our concern as an independent provider is that it just puts a bigger target on our backs,” said one provider, referring to concerns that independent providers who take reimbursement for services will be sought out.
These providers pointed to the imbalance of resources between Planned Parenthood and the many independent clinics struggling to provide high-quality care on small budgets with small margins. One benefit to being the nation’s largest provider of reproductive health care is that just by sheer numbers, PPFA has an enormous base of financial support; the people they’ve served often go on to donate so that others can access health care. Independent providers do not have the same resource base and so have different concerns about marginal costs.
Providing the option for fetal tissue donation and then ensuring the integrity of the tissue until it gets to researchers is far more costly than is widely understood. First, there are training costs. All staff involved in any aspect of the fetal tissue collection and donation have to be specially trained, including the people responsible for its packaging and transport. The training is expensive and must be repeated each time a new staff member comes on board.
Then there are recurring costs. At one clinic, the total costs in 2014 for the number of hours involved spent by employees directly involved in fetal tissue research came to approximately $64,700. Indirect costs, such as facility overhead, supplies, and administrative support came to $23,300.
The director of this clinic said: “When comparing our expenses and the reimbursement collected, (based on a negotiated fee), the resulting gap is inked in red. We absolutely make no income by participating in this program. It is the non-tangible positive benefits that are so much more far reaching, for our community, staff, and most of all the women, and families, who elect to participate.” Independent providers noted that if non-reimbursement were to become the norm, independents would not be able to sustain their services without recouping the marginal costs of collecting and donating tissue.
Others worried about whether declining reimbursement will reinforce the stigma manufactured by the right around reproductive health care generally and abortion particularly. This is, of course, the aim of the anti-choice movement: to so vilify and isolate providers that even in a country in which roughly one in three women have at least one abortion and where everyone needs sexual and reproductive health care, stigma—coupled with violence and legal harassment—will drive providers to give up providing services or shame women into not seeking services.
Some independent providers are concerned about the same effect regarding abortion providers and reimbursement for services such as fetal tissue donation. “I value abortion work and time,” says Jenifer Groves, executive director of the Cherry Hill Women’s Center. “To honor the work we do we need to realize that it has value,” she continued. “Altruism is threaded throughout everything we do. Expecting to be paid for a service is prevalent in nonprofit and for-profit work, and the work can still be done with heart. This move increases stigma and indies will get the brunt of it. I love PP but I can’t not see this.”
In a very real sense, the questions raised by independent providers around Planned Parenthood’s decision to forgo reimbursement for the work involved in donating fetal tissue reveal the ongoing tensions and questions faced by reproductive health-care providers writ large. What is the right balance between holding your ground on principle and taking actions meant to win a shorter-term battle, when doing so may affect the outcome of the war? Who decides the balance?
How do we draw a line in the sand that protects integral public health work without compromising either its integrity or the broader understanding of what it takes to ensure that work survives? How can the climate of stigma and discrimination against reproductive health providers—and by extension against all the people who need their services—be challenged and reversed? What responsibility do larger and smaller providers of reproductive health care have to each other? And how can they both co-exist?
These questions are important and the concerns worth noting. That said, there is as yet no concrete evidence that PPFA’s decision to decline reimbursement will affect independent providers.
Still, all of these and other questions must be carefully considered, because only one thing is certain: The dedication of a movement organized, focused, and working relentlessly to eliminate access to essential reproductive health care for all people.