Spring 2025 Newsletter
Table of Contents
Director’s Report
Regional Reports
Committee Reports
Recommended Reading
- What a $2 Million Per Dose Gene Therapy Reveals about Drug Pricing
- Republicans Once Wanted Government out of Health Care. Trump Voters See It Differently.
- My $30,000 health insurance claim was denied. Then I tweeted about it.
HCFAO Public Forum: Healthcare Stories from Healthcare Providers
Sat., Apr 26, 10:00 AM
Register for the event here
Director’s Report
Kendall Mays
March 2025
There has been a lot happening.
- U.S. Representative Greg Landsman (D-Cincinnati) signs Jayapal’s letter in support of Traditional Medicare.
- We are looking for Coordinators for Region 6 and 2. (Robert Kemp will be resigning as Region 2 Coordinator and as Treasurer. We want to thank Robert for the work he has done this past year.)
- The three-year Strategic Plan is currently under development.
- National Nurses United is working on Medicare for All in Ohio. I will be contacting them next week to gather more information.
- Marketing Committee has been working on and ordering materials for Healthcare for All Ohioans to table this year. T-shirts, ink pens, Rack Cards, banner, and more.
- The Senate has introduced SB 78, the Ohio Health Care Plan.
- The House will be introducing their bill shortly. Rumor has it, that Ohio will be introducing along will 20 other states. Everyone should be getting ready for lobby day in Columbus. Check with Dee Chavez for the next meeting date.
- We have hired a fund-raising company and will be working closely with them.
- A ballot initiative will be getting ramped up very soon.
Regional Reports
| Regional Coordinators, with their contact information, are noted. Please contact the Coordinator for your region if you would be interested in joining. If you are interested in filling an open position, please contact span@spanohio.org. (We currently need a Regional Coordinator in Region 2 [Toledo] and Region 6 [Akron, Canton, and East Central Ohio]).] |
| Region 1 (Cleveland, Northeast Ohio) Coordinator: Cathe Caraway (310-749-6111) cathe@carawaylaw.com Almost a dozen HFCAO/SPAN members participated in a Resistance Fair held in Cleveland Heights on Feb 8. The Fair was trying to encourage activists to get involved. About 25 organizations, including us, hosted tables. About 1,000-2,000 people attended and made connections with the various organizations.   Another Resistance Fair on the West Side of Cleveland is being held on March 29, and we will be there as well. The Cleveland group of HCFAO/SPAN has been meeting monthly, and we are planning various outreach events for Spring and Summer. We have also been doing some lobbying. Matthew Liu Reports: “So far, we’ve met with the aides of US District 11 Representative, Shontel Brown (D). The meeting was virtual and was attended by myself, Cathe Caraway, Linda Brown, Dee Chavez, and Nakshatra Mohan. We primarily discussed what Rep. Brown was doing to prevent cuts to Medicare and Medicaid, and to gauge Rep. Brown’s awareness and aptitude to fight against the expansion of Medicare Advantage. Her aides pointed to Rep. Brown’s record in the past of voting against cuts to Medicare and Medicaid, and the aides were unaware of the attempt to replace traditional Medicare with privatized Medicare Advantage.” At Rep. Brown’s town hall at the Arnold Pinkney East Professional Center, Matthew Liu addressed Rep. Brown, saying “Thank you for making fighting against cuts to Medicare and Medicaid a major priority of yours, but what are you going to do to fight against the expansion the privatization of Medicare, mainly through Medicare Advantage?” Rep. Brown was unaware of our concern with Medicare Advantage, and she stated that she would fight against the privatization of Medicare and learn more about the issue. Both the question and Rep. Brown’s answer received applause from the audience. Matthew Liu’s report continues, “We also met with the aide of Ohio District 17 Representative, Mike Dovilla (R). The meeting was virtual and was attended by myself, Linda Brown, Dee Chavez, and Nakshatra Mohan. We had originally agreed that the meeting would be with the representative, but he cancelled last minute due to the necessity of addressing budget cuts. Dee described the abysmal state of healthcare in Ohio and how the Ohio Health Care Plan would fix many of those issues. Rep. Dovilla’s aide admitted that Dovilla does not have a policy stance on healthcare, stating that the Rep. focuses on workforce development and education. Linda and I explained to the aide how the Ohio Health Care Plan and improving healthcare outcomes would greatly benefit the workforce and education in Ohio. Overall, the aide seemed to be attentive and admitted he learned some things.” Also, several people, mostly medical students, met with an aide to US Representative Emilia Sykes (D-Akron). The meeting mostly focused on asking Rep. Sykes to sign on to the Pramila Jayapal letter on opposing Medicare [Dis-]Advantage. The aide seemed to be uninformed about the letter. The group is going to follow up. One of the people who attended the Rep. Sykes meeting, Grayson Rentz, also attended a recent Telephone Town Hall. He reports: “It seems to be that Rep Sykes is heavily focused on the Medicaid/Medicare cuts. Between this event and the congress call a few weeks ago, I’ve not heard Medicare Advantage talked about. I wanted to ask a live question about it but did not get the chance to do so.” Only 10 questions were answered of over 200 submitted. The next meeting of our Cleveland area group will be Monday, March 31 at 5:00 on Zoom. Contact Clevelandspan@spanohio.org for the link if you are interested. Several members of our group have been been getting together for a Health Book club. We finished reading an excellent book, Medicare for all, a Citizen’s Guide.  In April we will be discussing the report “Economic Analysis of Single Payer Health Care in Ohio” (which is available on the Healthcare for All Ohioans website – see bottom of the newsletter). We will be meeting Friday, April 4 at 3:30 PM. Please Contact Clevelandspan@spanohio.org for details.  – Cathe Caraway, Region 1 Coordinator |
Region 4 (Cincinnati, Southwest Ohio)
Coordinators: Deliah (Dee) Chavez (513-413-1178) dee49@fuse.net and
Charles (Chot) VanAusdall (513-617-5129) vanausdall@fuse.net
Region 4 met in January 2025 and elected a co-coordinator, Charles (Chot) VanAusdall to work with current coordinator, Dee Chavez. With 4 new members attending that meeting, we are inspired that our message is attracting more working age adults to join us and carry on our work. We had open discussion about where our focus should be.
One area of focus identified is to address areas of healthcare deserts, ie where hospitals have been closed, and there is a shortage of doctors, including specialists.
Another focus is recruitment of activists.
Leaders in Region 4 have given three presentations to various groups on the Ohio plan for universal single payer healthcare, as well as the national plan.
Our region continues to work closely with the Cincinnati chapter of PNHP (Physicians for a National Health Program). PNHP has been focused on preventing privatization of Medicare by educating the public about the fraud, waste, and abuse of the Medicare Advantage plans. To that end, we have presented this issue along with the above presentations. We have met with three U.S. Congresspeople and/or their aides on this issue as well.
Region 4’s next meeting will be Wednesday, April 2nd at 7PM by Zoom. If you wish to attend, contact Dee for the Zoom link.
Dee Chavez, Coordinator Region 4
HCFAO Region 5 (Columbus, Central Ohio)
Coordinators : Kurt Bateman (614-562-1066) kurt.pdamerica@gmail.com
Tamie Wilson, tamie@tamiewilson.com
Region 5 has decided to schedule our monthly zoom meetings on the third Sunday of every month at 7 PM. Contact one of the coordinators for details.
In the most recent meeting, we discussed dividing our regional list by county and calling into those counties to organize more local leaders. In that way our members across Ohio will be organizing in more localities and finding more ways to engage with the wider citizenry.
March 2nd members of HCFAO attended the Indivisible Delaware County kickoff and distributed palm cards and flyers.
March 19th Region 5 members Bob Krasen & Marilyn Webster organized a “house party” in conjunction with National Nurses United at the Unitarian Universalist Church in Columbus. Together we formed a committee to visit representatives’ offices to educate on the issue of Medicaid defense and advocacy for Medicare for All & the Ohio plan. We have a scheduled meeting with the Ohio House of Representatives Minority Leader on March 31st.
Plans for the near future include identifying opportunities for tabling at festivals and celebrations across the region this Spring.
We have garnered multiple sign-ups everywhere we have had the opportunity to present.
This month, HCFAO was invited to apply to present a panel discussion at the Peace and Healing Pavilion during Comfest Columbus this coming June. As we did last year, we look forward to also having a booth space on the community concourse there.
Region 7 (Dayton, West Central, Ohio)
Coordinators: Matthew Noordsij-Jones, (937-321-8698), mattnj78@gmail.com.
Bill Davis, (937-264-0377), wndavis2@gmail.com
Sue Sutton has arranged for Bill Davis to be a guest facilitator at Harmony Creek Church, 901 East Stroop Road, Kettering, OH 45429 on Sunday April 13th, 10:30 – 11:30 am to discuss healthcare justice.
Committee Reports
| Equity Committee Report Wow, a lot has happened in the last few months in the realm of health equity! If you are on our mailing list, you should be getting our monthly health equity emails where we have talked about the recent presidential attacks on diversity, equity, and inclusion work, disparities in care and action steps to protected undocumented immigrants and reproductive rights, and most recently, attacks against Medicaid funding. If you haven’t signed up, you can sign up on our website here. We held our first in-house DEI training for leadership which was enlightening for everyone involved and hope to have another health equity workshop in the coming months. Since the beginning of March, we have been transitioning our leadership from me (Amber Prater) to Nancy McCrickard, who will chair the committee once I begin my residency in pediatrics! A BIG thank you to Nancy for stepping up to lead this important work. With Nancy in the lead, we will continue to look for ways to improve our work, diversify our organization, and bring everyone’s voice to the table. You can always reach us at healthequity@healthcareforallohioans.org. As a reminder for our regional coordinators, continue to share your “why” stories, connect at cross-cultural events, and add your regional events to the calendar.All the best, Amber Prater, MPH, CHES®
The Lobby Committee has had good communication with the Ohio Representatives that are sponsoring companion legislation, Reps. Michele Grim and Tristan Rader. We were notified that these 2 sponsors plan to coordinate with at least 20 other states who plan to introduce similar legislation on the same day, likely within the next 1-2 months. We are actively planning an Advocacy/Lobby Day at the statehouse to meet with legislators to inform, educate, and request co-sponsorship. We are setting up meetings prior to Lobby Day with newly elected Representatives that may not be informed on the issue yet. In addition we have been working closely with the local chapter of PNHP to lobby U.S. Congresspeople to educate on the issue of preventing privatization of Medicare. We have met with 3 Congresspeople and/or their aides, to discuss a letter to be sent to CMS (Centers for Medicare and Medicaid Services) by Rep. Pramila Jayapal and 3 other Reps. requesting strong oversight and enforcement of actions to protect against the fraud, waste, and abuse in Medicare Advantage.After 2 meetings with U.S. Rep. Greg Landsman, District 1, he signed on to this letter with Rep. Jayapal along with dozens of others in Congress! He is the only legislator in Ohio so far to stand up for this cause. Dee Chavez, Chair Marketing Committee We are ordering new materials for each region, including new branded tents, banners, tablecloths, t-shirts, and promotional items including pens and handouts. Our hope is to have these in each region by end of April. Below is what the new T-Shirts will look like: Joy Bennett, Chair  |
Recommended Reading
What a $2 Million Per Dose Gene Therapy Reveals about Drug Pricing
Reporting Highlights
- A Record Price: The gene therapy Zolgensma helped children born with a fatal disease, spinal muscular atrophy, grow up to run and play. But the cost was stunning: $2 million per dose.
- Cashing In: While taxpayers and small charities funded the drug’s early development, executives, venture-capital backers and a pharma giant have reaped the profits.
- Priced Out: The drug’s cost adds to the nation’s ballooning bill for prescription drugs and puts Zolgensma out of reach for kids in many low- and middle-income countries.
Summary
When Zolgensma hit the market five years later, it was hailed as a miracle drug. Some babies treated with it grew up able to run and play. It helped reduce U.S. death rates from SMA, long the leading genetic cause of infant mortality, by two-thirds.
That leap forward came at a sky-high price: more than $2 million per dose, making Zolgensma then the costliest one-time treatment ever.
How did a drug rooted, like many, in seed money from the U.S. government — that is, American taxpayers — and spurred by the grassroots fundraising of desperate parents, end up with such a price tag?
The story of Zolgensma lays bare a confounding reality about modern drug development, in which revolutionary new treatments are becoming available only to be priced out of reach for many. It’s a story that upends commonly held conceptions that high drug prices reflect huge industry investments in innovation. Most of all, it’s a story that prompts, again and again, an increasingly urgent question: Do medical advances really have to be this expensive?
See full article in ProPublica: What a $2 Million Per Dose Gene Therapy Reveals About Drug Pricing
Republicans Once Wanted Government out of Health Care. Trump Voters See It Differently.
Like many Americans who voted for Donald Trump, Jason Rouse hopes the president’s return will mean lower prices for gas, groceries, and other essentials.
But Rouse is looking to the federal government for relief from one particular pain point: high health care costs. “The prices are just ridiculous,” said Rouse, 53 . . .
. . . as Trump begins his second term, many of the voters who sent him back to the White House welcome more robust government action to rein in a health care system many Americans perceive as out of control, polls show.
“That idea that government should just keep its hands off, even when things are tough for people, has kind of lost its sheen,” said Andrew Seligsohn, president of Public Agenda, a nonprofit that has studied public attitudes about government and health care.
“We’re wandering around the country with a set of old, outdated frameworks about what ordinary Democrats and ordinary Republicans like,” he said.
Republican voters strongly back federal limits on the prices charged by drug companies and hospitals, caps on patients’ medical bills, and restrictions on how health care providers can pursue people over medical debt.
. . . Sarah Bognaski, 31, an administrative assistant in upstate New York, is among the many Trump voters who say they resent profiteering by the health care industry. “I don’t think there is any reason a lot of the costs should be as high as they are,” Bognaski said. “I think it’s just out of pure greed.”
See full article in KFF Health News: Republicans Once Wanted Government out of Health Care. Trump Voters See It Differently.
My $30,000 health insurance claim was denied. Then I tweeted about it.
Public shaming works – but it’s also a sign of how broken the appeals process is in the US health insurance industry
. . . Social media outreach is not the conventional avenue through which to challenge health insurance-related delays and denials, but it can be effective. . . .
Nearly one in five medical claims processed by Affordable Care Act marketplace plans is denied in a given year. That amounted to 73m claims in 2023 alone – and that’s just a small share of the health insurance market. Because of the fragmented nature of American health insurance, it is difficult to know exactly how many claims are denied each year, but some estimates put the share between 10% and 20%.
. . . This onerous and unpredictable process highlighted how administrative headaches can drive health inequities, keeping coverage out of reach for some. . .
Health insurance appeals are complicated. Typically, a formal appeal begins with a “peer-to-peer” call between the prescribing physician and a physician employed by the insurer, followed by the submission of additional documentation of medical necessity, then the wait for a response. This may take 30 days in the case of a prior authorization, or 60 days in the case of medical services already received.
However, for an appeal to be successful, the patient needs to know they can appeal a coverage decision in the first place. . . .
See full article in the Guardian: My $30,000 health insurance claim was denied.My $30,000 health insurance claim was denied.
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