Partners in Health, a Nonprofit Corporation

09/24/2024 | News release | Distributed by Public on 09/24/2024 12:21

From the Hospital to the Halls of Congress: Advocacy at PIH

Partners In Health (PIH) was founded in 1987 on the principle that health care should be a human right for all-a somewhat radical belief, even today. Increasingly over time, PIH staff, colleagues, and supporters became advocates for people around the world as they fought for accessible, equitable health care, particularly in settings of poverty.

Advocacy within PIH has evolved over the years. From our beloved late Co-Founder Dr. Paul Farmer writing books and facilitating congressional briefings and hearings to share his personal beliefs and professional experiences, to now: a robust, dedicated Advocacy team with a strong network of grassroots supporters.

To build sustainable health systems, PIH is advocating every day, both behind the scenes and by the bedside, to advance global health equity.

To learn more about this part of PIH's work, we spoke with Joel Curtain, PIH Director of Advocacy; Vincent Lin, PIH Associate Director, Health Policy & Advocacy; and, Carole Mitnick, PIH Senior Research Associate and Harvard Medical School Professor, Global Health & Social Medicine. Below, edited and condensed, are their responses:

What does Advocacy mean at PIH?

Lin: Advocacy is an umbrella term that we use as an organization to talk about a lot of different work we do. PIH builds the evidence base for changing policy and uses that evidence coupled with our technical expertise to advocate with intergovernmental decision-makers in policy-setting organizations-like the World Health Organization (WHO).

We also integrate what we're learning from our work around the world in co-writing legislation with U.S.-based policymakers, and dedicated grassroots and coalition-based legislative advocacy. With our grassroots PIH Engage network, we've trained thousands of volunteers in federal legislative and appropriations advocacy, generating hundreds of meetings and thousands of contacts with Congress.

In broad coalitions, we advocate alongside community health workers (CHWs) for CHW funding in the U.S. at the state and federal levels, with Tribal leaders and providers for sustained financing to address Tribal health disparities, and with TB survivors to increase tuberculosis (TB) funding. We work to accompany and empower the communities most directly affected by injustice. We also mobilize a broad base of supporters in advocacy campaigns through calls to action like our latest push for passage of the End TB Now Act of 2023, where over 12,000 letters have been sent by constituents to their members of Congress.

We've also seen the power of coalitions of activists over decades who have won increases in funding and reductions in the prices of necessary medications and diagnostic tools.

Curtain: Eliciting structural change is core to PIH's history and mission. We've all been inspired by how PIH's care delivery work can create new political possibilities. This is why Bending the Arc is such a compelling film. However, there are many, many steps between care delivery and meaningful policy change, which require building and leveraging power meticulously and tenaciously. This is what our team is tasked with. So, to us, advocacy is a deliberate process of developing and executing strategies to build and leverage power to change specific policies and conditions that improve people's lives. All advocacy is based on power relations.

"[Advocacy] involves developing and executing strategies to build and leverage power to change specific policies and conditions that improve people's lives."

Mitnick: I think accompaniment is key to the PIH approach to advocacy. We advocate for what the population we serve needs, generating more resources or changing policy for the diseases of importance to those communities. And then it goes all the way up the chain to bring the needs of the patients we serve into the halls of power.

Lin: It's pretty amazing to have seen Dr. Paul Farmer constantly working to span multiple arenas-from huts in Cange to the White House, from local clinics to the WHO in Geneva, and from the medical classroom in Rwanda to the halls of Congress. Now, as an organization, we're scaling such efforts in tandem with partners at Brigham and Women's Hospital (BWH) and Harvard Medical School (HMS) and colleagues around the world.

Mitnick: And we take our advocacy to ministries of health in the countries where we work and to entities that define what's permissible or supported in global health projects. Locally, in countries and regions where PIH works, the teams are now organizing formal efforts to keep governments accountable. To me, that's another form of PIH's advocacy.

How has advocacy at PIH evolved?

Mitnick: When I started at PIH in 1996, there was deliberately no advocacy strategy, as the focus was on direct service and bringing the best-known standard of care to the most marginalized. But through involvement in certain initiatives-for example, the treatment of HIV in Haiti-we realized that without a parallel advocacy effort to change the policies and the underlying assumptions that led to those policies, we weren't going to be able to effectively deliver care.

"We realized that without a parallel advocacy effort to change the policies and change the underlying assumptions that led to those policies, we weren't going to be able to effectively deliver care."

Lin: Historically, PIH programs on the ground have served as an example of what's possible. Back in the early 2000s, Dr. Paul Farmer was one of four physicians brought to the White House to inform the Bush administration on the treatment of HIV/AIDS. Paul described what PIH had achieved in impoverished, rural settings, and PIH's work demonstrated what could be later scaled through PEPFAR.

Paul always talked about growing the pie for global health equity funding overall. We've taken that mandate from him and applied it to our grassroots and coalition-based advocacy work. One thing that is unique today versus 20 years ago is that we have experts on training advocates, writing legislation, and federal and state budget cycles on our staff. We're trying to mobilize thousands of people, supporters and volunteers, to collectively and effectively improve public sector decision-making in an evidence-based manner.

Curtain: That it is evidence-based is so important. PIH has developed this work to be very specific, targeted, rigorous, and robust-intervening in specific processes along the way, knowing when to intervene, with whom to intervene, knowing local pressure, and doing so with an enormous grassroots constituency is something that makes PIH different from other global health organizations.

Are there other aspects that set PIH's advocacy efforts apart from similar organizations?

Lin: Our volunteers are pretty unique. PIH has attracted many people to the cause by operating from a framework of social justice: "Injustice has a cure." We're trying to give folks who already care about these issues a way to be active and effective in advocacy through formal training and organizing work.

"We're trying to give folks who already care about these issues a way to be active and effective in the advocacy space through formal training and organizing work."

Mitnick: PIH's approach to advocacy is unique in that it is informed by theory and rigorous evidence, both on the clinical care side and from a social justice foundation. Coming from the perspective that there actually are plenty of resources in the world if they are reallocated intentionally, in conjunction with a delivery model that prioritizes marginalized populations and uses advocacy to support them, using the research that comes from partnerships with BWH and with HMS as well as other partners... PIH does all that and advocacy is a core pillar of the whole model.

How does Advocacy help grow the health and social justice movement?

Mitnick: Our advocacy work helps bring people along who were very invested in the mission of PIH, but who weren't going to go to medical school or public health school. They weren't ever going to work in this space, but the advocacy work and having the opportunity to change things fundamentally also created a way for people to get involved with PIH.

It's been so important for us to form alliances with affected populations and other organizations to work toward some of these changes, including reductions in the price of necessary treatment and diagnostic equipment, like the GeneXpert TB diagnostic test.

Can you give an example of how PIH advocacy has changed over the last 30 years?

Mitnick: I think our work in TB is such an incredible example because it goes all the way back to the beginning of PIH, in Haiti in the late 1980s, and the very first "randomized controlled trial" that PIH conducted studying the delivery of TB treatment. Unsurprisingly, it showed that, in an impoverished population in rural Haiti, TB treatment delivered with treatment support led to much better outcomes than TB treatment without support.

It was the first thing that was intentionally done by PIH to show the rest of the world and say, 'Hey, this is something that needs to be adjusted.' We didn't define this as "advocacy" at the time, but, in retrospect, it clearly was. It used an example from PIH's work as a model for how quality care could be delivered in impoverished settings.

In '98 and '99 we started to present results from our experiences treating TB to the WHO to try to revise treatment guidelines. Our efforts evolved from just doing the work, to doing it and trying to persuade global policymakers to think about how to reach those in need. This year, evidence from our endTB clinical trial has now informed treatment recommendations from the WHO.

Now we're on the other side of that guideline process-where there's still a lot of work to do to scale up these innovations-but we have a much more robust evidence base than we ever had before.

Lin: In August 2024, we led 130 congressional meetings between constituents and their elected officials on global and domestic TB legislation and funding. This year, a record 131 members of the House signed on in support of increasing global bilateral TB funding by 250%. That's a result of many volunteers-not just our supporters, but TB survivors and policy experts-going to Capitol Hill to specifically talk about TB.

It's been tremendous to see people picking up the phone and calling congressional offices and saying to the interns and staff there on a daily basis, 'I want to see TB funding grow.' I think that it's cool to see growth in the movement over the last five years, and how many more people know about and care about TB, and are willing to put their time and energy into advocating for it.

And this has paid off: On September 19th, the U.S. Senate passed the End TB Now Act. PIH supporters alone are responsible for 12,000 messages to Congress in support of the bill, a massive effort that we are so grateful for. However, we still need your help to get it through the House of Representatives.

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