by Benita Campbell, Ande Ciampa and Anita Knisely-Durham of the PPF-PA Campaign/Legislative Team
On May 13th, 2024, Put People First! PA (PPF-PA) hosted Pennsylvania’s first Public Healthcare Advocate Forum (PHA)! Co-sponsored by Partners for Dignity & Rights and members of the PA Poor People’s Campaign, the event brought together healthcare advocates from Nevada and Connecticut, state legislators, representatives from several state offices, and everyday people from PPF-PA and other working class organizations. Our members spoke to some of the many healthcare struggles facing Pennsylvanians, while the advocates from other states showed how offices like theirs play crucial roles in ensuring access to healthcare, preventing and alleviating medical debt, and holding healthcare profiteers accountable.
Drawing inspiration from states like Nevada and Connecticut, PPF-PA began to envision a Public Healthcare Advocate in our state in 2018. But, just what is a Public Healthcare Advocate, and how did we get here?
A Public Healthcare Advocate, or PHA, is a public office that protects patients and workers in the healthcare system, helps people appeal harmful decisions by healthcare companies and state agencies, and helps lawmakers better understand and improve our healthcare system. After winning the first public hearing on rising insurance premiums from the Pennsylvania Insurance Department in 2016, followed by statewide town halls in 2017, we realized that the systems supposedly in place to defend residents were really fighting for the interests of insurance companies! We knew that we needed someone to represent us, everyday people, at the state level and began organizing for a Public Healthcare Advocate. Since then, PPF-PA has held advocacy days in Harrisburg, met with legislators and State officials to discuss our vision, and drafted detailed legislation to bring about a robust Advocate’s office, guided by a community advisory board. May’s forum was a vital step forward for the PHA, connecting a bipartisan audience of PA lawmakers with two representatives from long standing offices who outlined just how powerful and successful advocates can be.
Reflecting on his office’s work in 2023, Connecticut’s Sean King reported a 70% success rate in appeals and over $4.6 million in recovered costs for residents. Khadyja Carter of Nevada highlighted similar accomplishments for her team. In 2023, Nevada’s Office of Consumer Health Assistance opened 1450 advocacy cases and saved residents nearly $2 million. These offices are not only effective at assisting people; they are also sustainable institutions, recouping far more money than is needed to operate them (Figure 1).
Figure 1: CT OHA Savings vs. Budget
A Public Healthcare Advocate in PA would no doubt achieve similar successes and be a champion of our class and a regulator of those who try to profit off our sickness and misfortune. We will continue to fight for our own advocate because we know that healthcare is a crisis for all of us and we need real representation in Harrisburg. Already, this struggle has strengthened our organization and partnerships and has helped us to unify everyday people across many lines of division, and while the work ahead will challenge us, it will also help us grow further. To that we say, “Forward Together!”
On Monday March 25th, members of Put People First! PA shared testimony about the challenges of getting life-sustaining insulin because of the for-profit healthcare system at a press conference with the Philadelphia District Attorney’s office.
Testimony was shared by Jesse, a public school teacher and the son of Southeast PA Healthcare Rights Committee member, Marcy, as well as Central Appalachia Healthcare Rights Committee member, Josh about their experience with diabetes. They were joined by Maureen May, the president of PASNAP, a local healthcare union, and a council person. Click here for coverage on 6abc , cbsnews and WHYY.
Put People First! PA is a politically independent, member-led and staff-free organization of people who have been harmed and have family and friends who have been harmed and/or killed by our for-profit, market-based healthcare system.
We will always speak out against the system that puts profit over people’s lives – as we organize all of us who are targeted for destruction by the healthcare system into a mass movement to change this society!
Josh, Central Appalachia Healthcare Rights Committee (read by Southeast PA member Jamie)
Hi all, my name is Joshua and I live in Johnstown, PA.
“A couple of years ago, my insurance company tried to force me to switch to a less effective insulin because it was cheaper. This different drug was not only less effective than the insulin I had been taking, it inflicted unpleasant side effects that affected my ability to concentrate and focus.“
Fortunately, I had a doctor who advocated for me, and within several months I was able to again access the insulin that was the most effective for me. Everybody who has diabetes should have access to the medication that is best for them.
It’s terrifying to think that people with diabetes are forced to ration or settle for a less effective insulin because of greed on the part of pharmaceutical companies and insurance companies. Every top prosecutor in Pennsylvania should also be taking on corporations that harm people just to make an extra buck.
But this isn’t just about Diabetics, profiteering needs to get out of our healthcare system for everybody. There are many diabetics who are poor and working class who are forced to choose between paying for food, or paying for their life sustaining medications.
This system is impoverishing us, and poverty is the 4th leading cause of death in this country. Healthcare profiteering contributes directly to this death by leaving us sick and impoverished so that Wall Street can make profits.
I organize with Put People First PA, to get this message heard, that unless we unite and get together, we don’t have the power to change things. These corporations see healthcare as a place to make money. For us, healthcare is a basic human need and a human right endowed by God.
If you’re impacted by insulin price gouging, hospital closures, Medicaid cut-offs, lack of vision, dental and mental healthcare, if you’re uninsured or underinsured, we need you in this fight to put people first!
Jesse, Southeast PA
Krasner Press Conference RemarksMy name is Jesse Braxton, I am a chemistry teacher at Central High School, and a type 1 diabetic since I was diagnosed at 5 years old.
Diabetes is a life threatening condition that can result in a large number of frightening complications, such as blindness, kidney disease, and amputations.
There is only one way to prevent these complications: keep blood sugar at normal levels through careful management with insulin.
Like every type 1 diabetic, my life and well being depend on uninterrupted access to insulin, and I have worn an insulin pump 24 hours a day every day for more than 20 years now. I also wear a continuous glucose monitor which, along with my insulin pump, allows me to carefully control my blood sugar in hopes of avoiding serious complications.
To me, insulin is a lifeline. To the pharmaceutical companies that make insulin, it is a product with locked in consumers that literally can’t live without it.
This has given them the ability to charge whatever they want, which they have taken advantage of in order to bring in massive profits. The group T1International, which advocates for people with diabetes, estimates the cost to produce a vial of insulin is between $3 and $6, yet last year the out of pocket cost for a vial of insulin, enough to last me about three weeks, was nearly $300.
And that is just the cost of insulin. The out of pocket cost for my insulin pump is $4000. The supplies needed to use my pump and continuous glucose monitor are an additional $300 a month.
I am grateful that all of these technologies exist and allow me to live a relatively normal life, but for diabetics, there’s enough on our shoulders without having to worry about all of these costs.
Because of this, I have organized my life around having access to quality insurance, knowing that even a short lapse in health coverage could cost me thousands of dollars. I love being a teacher, working with young people to help them make sense of the world around them is one of my greatest passions, but when I chose my career I only considered options that would provide me with reliable, affordable health coverage, because my life depends on my insurance company.
If you’ve ever had to deal with an insurance company, you know having your life depend on one is not a comfortable place to be.
A few times I have been between jobs and had to pay the out of pocket cost for my insulin and other medical supplies, and it was painful to have to do so. I remember stretching out my last vial of insulin, even changing my diet to make it last longer, before realizing there was no way to avoid paying up.
And I am lucky that I have only had to do this a few times. I have read heart wrenching stories of diabetics who lost their lives because they couldn’t afford a vial of insulin, with loved ones later finding empty vials left in their homes that they had drained to the last drop.
It is unconscionable that we would allow this to continue, and I applaud DA Krasner’s decision to take action.
At the same time, we all need to recognize that insulin price gouging is not an isolated problem. It is a symptom of a medical system that consistently puts profits before people.
It is a medical system that puts profits over people that led to my insurance company denying my recent claim for glucose monitoring supplies, resulting in a $1200 bill that I had to spend dozens of hours fighting.
It is a medical system that puts profits over people that led to the closure of Hahnemann hospital in 2019, with nothing to fill its place when our hospitals were overflowing with Covid patients a few months later.
It is a medical system that puts profits over people that refuses to acknowledge that healthcare is a human right that nobody should be denied.
I am glad that DA Krasner is taking on the companies that have raked in profits while overcharging people who are dependent on insulin to stay alive, but we can’t stop there. A lawsuit is a start, but it will not change our medical system. Those of us who recognize the injustice of the current medical system have to come together, get organized, and demand a system that puts people first.
Put People First! PA joined Philly Mennonite Action in urging City Council members to support a Ceasefire in Gaza at City Hall on Monday, March 25.
Unexpectedly, the more than 70 people in attendance were refused entrance to the building. Only two adults and three children were allowed to enter and meet with council members and staff in their offices to ask them to join with more than 60 other cities whose councils have voted to endorse a ceasefire in Gaza.
Despite the lockout, the group continued their planned worship service outside, singing, praying, and reading names from a list of the thousands of children killed in Gaza. Their signs called for Peace, Ceasefire, and “Food not Missiles.” PPF-PA’s banner bore a quote from Martin Luther King, Jr., “Bombs Dropped Overseas Explode at Home.”
Afterward, Rev. Jay Berger of Germantown Mennonite Church introduced PPF-PA as a participant and praised our work for health justice for people on Medicaid. PPF-PA members Jacob, Ben, Jeanette, Steph and Janet attended and gathered names of people with Healthcare stories to share.
The Philadelphia Mennonite Action group is part of a network of churches across the U.S. and Canada. The Philadelphia events, also endorsed by Jewish Voices for Peace and Philadelphia Healthcare Workers for Palestine, was one of many events calling for a ceasefire in the region during the week before Easter.
— Janet Wells Greene, Southeast PA Healthcare Rights Committee
We are publishing Put People First! PA’s bi-annual newsletter, The Keystone, in the season of the longest night of the year; cold, isolating and bitter. Some of us are unhoused, others sick and many have died. We memorialize those we have lost, welcome the newborn, and tell our stories of struggle in this time of the war economy creating many crises for the poor and dispossessed.
We share highlights of our organizing drive to fight the Medicaid Cut-offs, and updates on our campaign for the restoration of the full adult dental benefit to Medicaid. We share poetry, videos and member reflections from our National Nonviolent Medicaid Army’s Arts & Culture nights or following our actions & events.
We hope our stories show you why we must unite and organize ourselves to overcome division and transform society. We invite you to become involved in this struggle! — The Put People First! PA Media & Communications Team
