IN low-resource nations like Jamaica, there are several health-care financing models that could mitigate the various limitations of traditional health insurance and could be potentially beneficial for patients, especially the very large pool of patients in the informal economic sectors. These options aim to increase access to health-care services and reduce financial barriers. When considering health-care coverage for people employed in the informal sector in developing countries, a financial model that suits their unique needs and circumstances is crucial. Last week, we explored the concept of alternative health-care financing models for informal sector workers in Jamaica who are traditionally excluded from traditional health insurance schemes. In our column today, we will explore some of these specific models in more detail.

1. National health insurance. Implementing a national health insurance system can provide coverage for the entire population. This approach pools resources from various funding sources, such as taxes, premiums, or contributions, to finance health-care services. It ensures that essential health services are available to everyone, regardless of their current health status, age or ability to pay. This is often referred to as Universal Health Insurance and is widely available to citizens of many countries where health care is recognised as a national imperative. The social contract between the state and the citizens as well as the nexus between good health care and economic development form the bedrock of the advocacy for universal health insurance.

2. Community-based health financing. This approach involves establishing community-based health insurance schemes or micro-health insurance programmes. These programmes are designed to meet the needs of specific communities or low-income groups and can be tailored to the needs of informal sector workers, considering their irregular incomes and specific health-care needs. They often involve contributions from members of the community, which are used to cover health-care costs. Community health financing can be effective in reducing the burden of health-care expenses on individuals. For this to work, there must be a sense of community that obligates people to sign on to such schemes even when they may not be immediate beneficiaries. Many communal living societies in Asia and Africa embrace this concept because of cultural socialisation. By organising at the community level, these models can promote solidarity, local ownership, and accountability. Examples of successful community-based health insurance schemes include the Mutuelles in Rwanda and the Community Health Fund in Tanzania.

3. Social health protection programmes. These programmes target vulnerable populations, such as the poor, informal sector workers, and marginalised groups. They provide financial risk protection by offering subsidies or exemptions for health-care services. Social health protection programs can be funded through government allocations, donor support, or a combination of both. They may offer exemptions, subsidies, or reduced-cost services to ensure affordable health-care access. Ghana's National Health Insurance Scheme and Thailand's Universal Coverage Scheme are examples of successful social health protection programmes.

4. Health savings accounts. Health savings accounts allow individuals to set aside funds specifically for health-care expenses. These accounts are usually paired with high-deductible insurance plans, where individuals pay out-of-pocket costs up to a certain threshold. Health savings accounts can empower individuals to make informed decisions about their health care spending and provide a safety net for unexpected medical expenses. In some countries, tax incentives are provided to individuals to encourage health savings accounts. In such situations, funds contributed to a health savings account is exempt from taxes up to a specified limit. However, penalties and taxes would accrue if such funds are used for anything other than health care.

5. Donor funding and grants. Low-resource nations can seek support from international organisations, NGOs, and philanthropic foundations to secure funding for health-care services. Donor funding and grants can be used to improve infrastructure, strengthen health-care systems, and provide subsidies or grants to individuals who cannot afford essential health care. HIC Foundation has used grants to support individuals seeking certain services at HIC, for example. Our current HIC Save a Life programme is based on generous grant support from HIC Foundation allowing qualified patients with heart attack and unstable cardiac conditions to obtain angiogram, angioplasty with stent and hospital admissions at about 30 per cent of the usual costs with the rest paid for by HIC Foundation grant.

6. Public-private partnerships. Collaborations between the public and private sectors can help leverage resources and expertise to improve health-care financing. Public-private partnerships can involve contracting private health-care providers to deliver services, establishing insurance programmes with private sector participation, or engaging in joint initiatives to address specific health-care challenges.

7. Microinsurance. Microinsurance refers to insurance products designed for low-income individuals or households, including those in the informal sector. These products typically have low premiums and simplified administrative processes. Microinsurance plans can provide coverage for specific health-care services or a package of essential health benefits. They can be offered through partnerships between insurance providers, microfinance institutions, and community-based organisations. Examples include the Health Insurance Fund in India and the Kilimo Salama (Safe Agriculture) initiative in Kenya.

8. Government subsidies and vouchers. Governments can provide targeted subsidies or vouchers to informal sector workers to help cover health-care costs. These subsidies can be used to purchase health insurance, health-care subscriptions or access specific services at reduced costs. By directly supporting individuals in the informal sector, governments can increase their access to health care without creating an additional administrative burden for them. The Seguro Popular programme in Mexico and the Rashtriya Swasthya Bima Yojana (RSBY) in India have employed this approach. This is an approach that can be effective in Jamaica especially if targeted at informal sectors that have brought prosperity and global recognition for Jamaica like the creative industries, specifically musicians and music producers and sports, notably track and field athletes.

9. Mobile-based health financing. Leveraging mobile technology can be an effective approach to reach and engage informal sector workers. Mobile-based health financing models can include mobile payment platforms, mobile savings accounts, or mobile insurance applications. These models facilitate easy premium payments, claims processing, and access to healthcare services. Examples include M-TIBA in Kenya and Aavaz Health in India.

It's important to note that the suitability and effectiveness of these health-care financing options may vary depending on the specific context and needs of each community. Additionally, partnerships between governments, private sector entities, and community-based organisations are often crucial for the success of these initiatives. The suitability of these financial models depends on the specific context, resources, and infrastructure available in each developing country. It is important to consider the preferences, needs, and capacities of the informal sector workers themselves, involving them in the design and implementation of the financial model.

Implementing a combination of approaches tailored to the local circumstances is often necessary to achieve sustainable, inclusive and equitable health-care financing.

Dr Ernest Madu, MD, FACC and Dr Paul Edwards, MD, FACC are consultant cardiologists for the Heart Institute of the Caribbean (HIC) and HIC Heart Hospital. HIC is the regional centre of excellence for cardiovascular care in the English-speaking Caribbean and has pioneered a transformation in the way cardiovascular care is delivered in the region. HIC Heart Hospital is registered by the Ministry of Health and Wellness and is the only heart hospital in Jamaica. Send correspondence to
info@caribbeanheart.com
or call 876-906-2107.

Santo Domingo.- The sale of uncertified medicines through social media platforms without any medical endorsement is a growing concern for health authorities in the Dominican Republic. Minister of Public Health, Daniel Rivera, raised the alarm about these “miracle drugs” being promoted without scientific backing, often using influencers or false advertising to attract buyers.

Many of these products are being advertised on social networks, claiming numerous benefits and even employing popular figures and influencers to entice consumers. People often fall victim to scams when purchasing these products. Rivera stressed the need for increased controls and intervention to address this issue, while also urging the public to remain vigilant and ensure that the products they buy or consume have proper regulation and certification.

Rivera cited an example from last year when his own image was used without consent to endorse blood pressure products, a situation he promptly denounced. The responsibility of verifying the regulation and certification of medicines, as well as suspending and removing counterfeit or expired products, falls under the General Directorate of Medicines, Food, and Health Products of the Ministry of Public Health (Digemaps).

The Minister encouraged the public to ensure that health products and services they consume or purchase have the proper regulation, certification, or authorization issued by the Ministry of Public Health to guarantee their quality. He further revealed that 137 centers have been shut down this year for non-compliance with licensing regulations.

The Dominican Republic recently hosted the “Congress of Central American Drug Regulatory Agencies,” where 12 Latin American nations aimed to strengthen controls in the marketing of consumer products. The participating countries, including Costa Rica, El Salvador, Guatemala, Honduras, Nicaragua, and Panama, sought to establish common regulations and controls at the regional level. The Pan American Health Organization (PAHO) reiterated its commitment to providing technical cooperation requested by member states to strengthen drug regulatory authorities in Central America and the Dominican Republic.

Santo Domingo.- On August 4th, the Dominican Republic will be celebrating the 20th anniversary of the 2003 Pan American Games held in its capital city. However, if the Ministry of Sports and Recreation (Miderec) fails to address the repeated warnings from the World Anti-Doping Agency (WADA), the country could face severe international sanctions, including restrictions on its athletes’ participation in global events as a neutral team without their flag and anthem.

The situation parallels the challenges faced by Russian athletes following a 2019 sanction for violating the World Anti-Doping Code. In a communication/ultimatum sent by María José Pesce, the director of WADA’s Latin American office, to Miderec and the Dominican Olympic Committee (COD) on May 4th, it was stated that unless 15 suggested corrective actions are taken by August 4th, the non-compliance chapter of the World Anti-Doping Code will be activated, leading to significant consequences for Dominican athletes and the country as a whole.

The core issue revolves around the lack of financial allocation to the National Anti-Doping Agency, with an estimated annual funding of no more than RD$10 million. Failure to comply with the World Anti-Doping Code can result in the withdrawal of all financial and logistical assistance from WADA. Additionally, the suspension of recognition by the Olympic and Paralympic Movements could be imposed, preventing the country from organizing official competitions and participating in specific events.

The alert from WADA comes at a crucial time as the Dominican Republic prepares to participate in the upcoming Central American and Caribbean Games in El Salvador and faces potential disqualification from major events such as the Pan American Games in Santiago, Chile, and the qualifying competitions for the 2024 Paris Olympic Games.

To avoid such consequences, WADA’s letter emphasizes the need for financial resources to meet the requirements of the World Anti-Doping Code. This includes addressing the recommendations outlined in the audit conducted in the country in December, implementing a control distribution plan, conducting a risk analysis, complying with technical analysis documents, and establishing an adverse results management unit.

The urgency of the matter necessitates action from Miderec and the COD to ensure compliance and secure the future participation of Dominican athletes in international sporting events.

Global Oxygen Alliance launched to boost access to life saving oxygen

Cristina Mitchell

25 May 2023

The office of the Chief Pharmacist and Pharmacy Inspector has been temporarily relocated to the ground floor of the new wing (phase 2) of the General Hospital, St George’s

View the full post Temporary Relocation of Chief Pharmacist and Pharmacy Inspector’s Office on NOW Grenada.

The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

How should journalists cover political candidates who make false claims about the safety and effectiveness of vaccines? That question will need to be answered now that noted anti-vaccine activist Robert F. Kennedy Jr. has officially entered the 2024 presidential race.

Meanwhile, South Carolina has become one of the last states in the South to pass an abortion ban, making the procedure all but impossible to obtain for women across a broad swath of the country.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat, and Sarah Karlin-Smith of the Pink Sheet.

Panelists

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Among the takeaways from this week’s episode:

• Republican lawmakers and President Joe Biden continue to bargain over a deal to avert a debt ceiling collapse. Unspent pandemic funding is on the negotiating table, as the White House pushes to protect money for vaccine development — though the administration has drawn criticism for a lack of transparency over what would be included in a clawback of unspent dollars.
• In abortion news, South Carolina is the latest state to vote to restrict access to abortion, passing legislation this week that would ban abortion after six weeks of pregnancy — shortly after pregnant people miss their first period. And Texas is seeing more legal challenges to the state law’s exceptions to protect a mother’s life, as cases increasingly show that many doctors are erring on the side of not providing care to avoid criminal and professional liability.
• Congress is scrutinizing the role of group purchasing organizations in drug pricing as more is revealed about how pharmacy benefit managers negotiate discounts. So-called GPOs offer health care organizations, like hospitals, the ability to work together to leverage market power and negotiate better deals from suppliers.
• Lawmakers are also exploring changes to the way Medicare pays for the same care performed in a doctor’s office versus a hospital setting. Currently, providers can charge more in a hospital setting, but some members of Congress want to end that discrepancy — and potentially save the government billions.
• And our panel of health journalists discusses an important question after a prominent anti-vaccine activist entered the presidential race last month: How do you responsibly cover a candidate who promotes conspiracy theories? The answer may be found in a “truth sandwich.”

Also this week, Rovner interviews KFF Health News senior correspondent Aneri Pattani about her project to track the money from the national opioid settlement.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: KFF Health News’ “Remote Work: An Underestimated Benefit for Family Caregivers,” by Joanne Kenen

Alice Miranda Ollstein: Reuters’ “How Doctors Buy Their Way out of Trouble,” by Michael Berens

Rachel Cohrs: ProPublica’s “In the ‘Wild West’ of Outpatient Vascular Care, Doctors Can Reap Huge Payments as Patients Risk Life and Limb,” by Annie Waldman

Sarah Karlin-Smith: The New York Times’ “Heat Wave and Blackout Would Send Half of Phoenix to E.R., Study Says,” by Michael Levenson

Also mentioned in this week’s episode:

• KFF Health News’ “Abortion Bans Are Driving Off Doctors and Closing Clinics, Putting Basic Health Care at Risk,” by Julie Rovner.
• Stat’s “House Panel Takes First Steps Toward Reining In Hospitals With ‘Site-Neutral’ Changes,” by Rachel Cohrs.
• Vice’s “ABC News and CNN Manage to Demonstrate Exactly What Not to Do With Robert F. Kennedy Jr.,” by Anna Merlan.

click to open the transcript

Transcript: When an Anti-Vaccine Activist Runs for President

KFF Health News’ ‘What the Health?’

Episode Title: When an Anti-Vaccine Activist Runs for President

Episode Number: 299

Published: May 25, 2023

[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to “What the Health?”. I’m Julie Rovner, chief Washington correspondent at KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, May 25, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So here we go. Today we are joined via video conference by Rachel Cohrs of Stat News.

Rachel Cohrs: Hi, everybody.

Rovner: Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, Julie.

Rovner: And Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Later in this episode we’ll have my interview with KFF Health News’ Aneri Pattani about her project tracking where all of that opioid settlement money is going. But first, this week’s news. I suppose we have to start with the debt ceiling again, because how this all eventually plays out will likely impact everything else that happens in Washington for the rest of the year. First of all, as of this taping, at 10 o’clock on Thursday morning, there’s still no settlement here, right?

Ollstein: There is not. And depending who you listen to, we are either close or not close at all, on the brink of disaster or on the brink of being all saved from disaster. There’s a lot of competing narratives going around. But yes, as of this taping, no solution.

Rovner: I want to do a spreadsheet of how often the principals come out and say, “It was productive,” “It’s falling apart,” “It was productive,” “It’s falling apart.” I mean, it seems like literally every other time, particularly when Speaker [Kevin] McCarthy comes out, it was either “very productive” or “we’re nowhere near.” That seems to have been the gist for the past two weeks or so. Meanwhile, it seems like one thing Republicans and Democrats have at least tentatively agreed to do is claw back something like $30 billion in unspent covid funds. But, not so fast. The New York Times reports that the Biden administration wants to preserve $5 billion of that to fund the next generation of covid vaccines and treatment and another $1 billion to continue giving free covid vaccines to people without insurance. I feel like this is the perfect microcosm of why these talks are almost impossible to finish. They’re trying to negotiate a budget resolution, an omnibus spending bill, and a reconciliation bill all at the same time, with the sword of Damocles hanging over their head and a long holiday weekend in between. Somebody please tell me that I’m wrong about this.

Ollstein: Well, Congress never does anything unless there’s a sword of Damocles hanging over them and a vacation coming up that they really want to go on. I mean, do they ever make it happen otherwise? Not — not in our experience. But I do want to note that it is interesting that the Biden administration is trying to fight for some of that covid funding. Meanwhile, what they’re not reportedly fighting for is some of the other public health funding that’s at risk in that clawback, and I reported last week that some of Biden’s own health officials are warning that losing those tens of billions of dollars could undermine other public health efforts, including the fight against HIV and STDs [sexually transmitted diseases]. We have syphilis at record rates right now, and public health departments all around the country are counting on that money to preserve their workforces and do contact tracing, etc. And so that is another piece of this that isn’t getting as much attention.

Cohrs: There has been this ongoing fight between the White House and Republicans over covid money and how it’s being spent, for years at this point. And the White House has never really been fully transparent about exactly what was going to get clawed back. The Appropriations Committee was the one who actually put out some real information about this. And I think that trust has just been broken that the money is used where it’s supposed to be. I mean, even for the next-generation research project [Project NextGen] — I mean, they launched that like a couple of months ago, after Republicans had already threatened to take the money back. So I think there are some questions about the timing of the funding. [White House COVID-19 Response Coordinator] Ashish Jha said they didn’t know they had leftovers until recently, but I think this has just really turned into a mess for the White House, and I think the fact that they’re willing to offer some of this money up is just kind of a symbol and just a “ending with a whimper” of this whole fight that’s been going on for two years where they’ve been unsuccessful in extracting any more money.

Rovner: And yeah, I was just going to say, the White House keeps asking for more money and then they keep, quote-unquote, “finding money” to do things that are really important. Sarah, I wanted to ask you, how freaked out is the research establishment and the drug industry at whether, you know, will they or won’t they actually pony up money here?

Karlin-Smith: I think this could be pretty problematic because some of the type of companies that get this funding — some of them might be in a position to do this on their own, but others would essentially — you know, there isn’t necessarily a market for this without the government support, and that’s why they do it. That’s why the U.S. created this BARDA [Biomedical Advanced Research and Development Authority], which kind of funds this type of pandemic and other threats research. And so I think there are companies that definitely wouldn’t be able to continue without this money, because some of it is for things that we think we might need but don’t know if we definitely will. And so you don’t necessarily want to make the investment in the same way you know you need cancer drugs or something like that.

Rovner: We will see how this plays out. Perhaps it will be played out by next week or perhaps they will find some sort of short-term patch, which is another tried-and-true favorite for Congress. All right. Let’s turn to abortion. Last week, the North Carolina Legislature overrode the Democratic governor’s veto to pass a 12-week ban. This week was the South Carolina Legislature’s chance to say, “Hold my beer.” Alice, what happened in South Carolina, and what does it mean for availability of abortion in the whole rest of the South?

Ollstein: The governor is expected to sign this new restriction into law. Like many other GOP-led states. South Carolina was expected to quickly pass restrictions last year as soon as Roe v. Wade was overturned, but they got into fights within the Republican Party over how far to go, whether to have exceptions, what kind of exceptions, etc. It was the classic story we’ve seen play out over and over and over where, while Roe v. Wade was still in place, it was very easy for people to say, “I’m pro-life, I’m against abortion,” and not have to make those difficult, detailed decisions. So, yes, this could have a big impact, you know, especially with Florida moving for a much stricter ban. You know, the whole region is becoming more and more unavailable, and people are going to have to travel further and further.

Rovner: And South Carolina ended up with one of these six-week, quote-unquote, “heartbeat bills,” right?

Ollstein: That’s right.

Rovner: So it’s sort of shutting off yet another state where abortion is or really could be available. There’s more abortion-related court action, too. This week, in Texas, eight more women who experienced dangerous pregnancy complications joined a lawsuit seeking to force just a clarification of that state’s abortion ban that they say threatened their lives. One of them, Kiersten Hogan, had her water break prematurely, putting her at risk of infection and death, but says she was told by the hospital that if she tried to leave to seek care elsewhere, she could be arrested for trying to kill her baby. Four days later, the baby was born stillborn. Yet sponsors of the state’s abortion bill say it was never intended to bar, quote, “medically necessary abortions.” Why is there such a disconnect? And Texas is hardly the only place this is happening, right?

Ollstein: Yeah. Situations like this are why people are arguing that the whole debate over exceptions is sort of a fig leaf. It’s papering over how these work in practice. You can have exceptions on the book that say “life-threatening situations, medical emergencies,” etc. But because doctors are so afraid of being charged with a crime or losing their license or other professional repercussions, that’s just creating a huge chilling effect and making them afraid to provide care in these situations. A lot of times the state law also contradicts with federal law when it comes to medical emergencies, and so doctors feel caught in the middle and unsure what they’re supposed to do. And as we’re seeing, a lot of them are erring on the side of not providing care rather than providing care. So this is playing out in a lot of places. So I’m interested to see if this informs the debate in other states about whether to have these exceptions or not.

Rovner: And I get to promote my own story here, which is that we’re seeing in a lot of states either doctors leaving or doctors deciding not to train in states with abortion bans because they’re afraid of exactly those restrictions that could land them, you know, either in court or, even worse, in jail. We’ve long had abortion care deserts. Now we could see entire women’s health care deserts in a lot of these states, which would, you know, hurt not just the people who want to have abortions, but the people who want to get pregnant and have babies. We will continue to watch that space. Well, meanwhile, in West Virginia, another court case, filed by the maker of the generic version of the abortion pill mifepristone, could turn on a recent Supreme Court decision about pork products in California. Can somebody explain what one has to do with the other?

Karlin-Smith: There is basically a ruling that the Supreme Court issued the other week in a California case where the state was regulating how pigs were treated on farms in California. And the court basically allowed the law to stand, saying, you know, it didn’t interfere with interstate commerce. And the people who are protesting GenBioPro’s suit in West Virginia are basically saying that this, again, is an example where West Virginia’s regulation of the abortion drug, again, doesn’t really impact the distribution of the drug outside of the state or the availability of the drug outside of the state, and so this should be allowable. Of course, GenBioPro and the folks who are protesting how West Virginia is curtailing access to the suit are trying to argue the same ruling helps their cause. To me, what I read — and it seems like the comparison works better against the drug company, but it always is interesting to see this overlapping — you know, the cases you don’t expect. But I also, I think, when this ruling came out, saw somebody else making another argument that this should help GenBioPro. So it’s very hard to know.

Rovner: If it’s not confusing enough, I’m going to add another layer here: While we’re talking about the abortion pill, a group of House Democrats are reaching out to drug distribution company AmerisourceBergen, following reports that it would decline to deliver the pill to pharmacies in as many as 31 states, apparently fearing that they would be drawn into litigation between states and the federal government, the litigation we’ve talked about now a lot. So far, the company has only said that it will distribute the drug in states, quote, “where it is consistent with the law.” In the end, this could end up being more important than who wins these lawsuits, right? If — I think they’re the sole distributor — is not going to distribute it, then it’s not going to be available.

Ollstein: It also depends on the — at the 5th Circuit, and that will go back to the Supreme Court, because if it’s not an FDA-approved drug, then nobody can distribute it. That’s the ultimate controlling factor. But yes, since they are the sole distributor, they will have a lot of power over where this goes. And when I was reporting on Walgreens’ decision, they were pointing to this and saying that their decisions, you know, depend on other factors as well.

Karlin-Smith: And there’s a lot of nuance to this because my understanding is AmerisourceBergen, they’re particularly talking about distributing it to pharmacies where you could — under this new FDA permission to let pharmacies distribute the drug, which in the past they hadn’t.

Rovner: And which hasn’t happened yet.

Karlin-Smith: Right. They haven’t actually gone through the process of certifying the pharmacies. So it’s like a little bit premature, which is why I think Walgreens realized they probably jumped the gun on making any decision because it couldn’t happen yet anyway. But AmerisourceBergen is still saying, “Oh, we’re giving it to providers and other places that can distribute the drug in some of these states.” So it’s not necessarily like the drug is completely unavailable. It’s just about ease of access, I think, at this point.

Rovner: Yeah, we’re not just in “watch that space”; now we’ve progressed to “watch all those spaces,” which we will continue to do. Well, while we were on the discussion of drug middlepeople, there’s a story in Stat about the Federal Trade Commission widening its investigation of pharmacy benefit managers to include group purchasing organizations. Sarah, what are group purchasing organizations and how do they impact the price of prescription drugs?

Karlin-Smith: So group purchasing organizations are basically where you sort of pool your purchasing power to try and get better deals or discounts. So like, in this case, one of the GPOs FTC is looking at negotiates drug rebates on behalf of a number of different PBMs, not just one PBM. And so, again, you know, the idea is the more people you have, the more marketing you have, the better discount you should be able to get, which is — I think some people have been a little shocked by this because they’re like, “Wait, we thought the PBMs were the ones that did the negotiation. Why are they outsourcing this? Isn’t that the whole purpose of why they exist?” Yeah, so FTC has sort of a broader investigation into PBMs, so this is kind of the next step in it to kind of figure out, OK, what is the role of these companies? How are they potentially creating bad incentives, contributing to increased drug pricing, making it harder for people to perhaps, like, get their drug at particular pharmacies or more expensive at particular pharmacies? Again, because there’s been a lot of integration of ownership of these companies. So like the PBMs, the health insurance, some of these pharmacy systems are sort of all connected, and there’s a lot of concern that that’s led to incentives that are harming consumers and the prices we’re paying for our health care.

Rovner: Yeah, there’s all that money sloshing around that doesn’t seem to be getting either to the drug companies or to the consumers. Rachel, you wanted to add something?

Cohrs: Sure. I think GPOs are more used with hospitals when they buy drugs, because I think PBMs — you think of, like, going to pick up your drug at the pharmacy counter. But obviously hospitals are buying so many drugs, too. And their, you know, market power is pretty dispersed across the country. And so they also are a big customer of GPOs. So I think they’re also trying to get at this, like, different part of the drug market where, you know, a lot of these really expensive medications are administered in hospitals. So it will be interesting. They’re certainly not very transparent either. So, yeah, interesting development as to how they relate to PBMs, but also the rest of — you know, encompassing a larger part of the health care system.

Karlin-Smith: Yeah, I have seen complaints from hospital systems that the GPOs require them to enter into contracts that make it very difficult for the hospital to pivot if, say, the GPO can’t supply them with a particular product or maybe it’s … [unintelligible] … and then they end up stuck in a situation where they should, in theory, be able to get a product from another supplier and they can’t. So there’s lots of different levels of, again, concern about potential bad behavior.

Rovner: Well, while we are on the topic of nerdy practice-of-medicine stuff, Rachel, you had a story on the latest on the, quote, “site-neutral” Medicare payment policy. Remind us what that is and who’s on which side, and wasn’t that one of the bills — or I guess that wasn’t one of the bills that was approved by the House Energy and Commerce Committee yesterday, right?

Cohrs: No, so “site neutral” is basically hospitals’ worst nightmare. It essentially makes sure that Medicare is paying the same amount for a service that a doctor provides, whether it’s on a hospital campus or provided in a doctor’s office. And I think hospitals argue that they need to charge more because they have to be open 24/7. You know, they don’t have predictable hours. They have to serve anyone, you know, regardless of willingness to pay. It costs more overhead. That kind of thing. But I think lawmakers are kind of losing patience with that argument to some degree, that the government should be paying more for the same service at one location versus another. And it’s true that House Republicans had really wanted an aggressive form of this policy, and it could save like tens of billions of dollars. I mean, this is a really big offset we’re talking about here, if they go really aggressively toward this path, but instead they weren’t able to get Democrats on board with that plan yet. I think the chair, Cathy McMorris Rodgers, and the ranking member, Frank Pallone, have said they want to keep working on this. But what they did do this week is took a tiny little part out of that and advanced it through the committee. And it would equalize payment for, like, drug administration in physician’s offices versus a physician doing it in the hospital, and the savings to the federal government on that policy was roughly $3 billion. So, again, not a huge hit to industry, but it’s, you know, significant savings, certainly, and a first step in this direction as they think about how they want to do this, if they want to go bigger.

Rovner: So while we’re talking about the Energy and Commerce Committee, those members, in a fairly bipartisan fashion, are moving a bunch of other bills aimed at price transparency, value-based care, and a lot of other popular health buzzwords. Sarah, I know you watched, if not all, then most of yesterday’s markup. Anything in particular that we should be watching as it perhaps moves through the House and maybe the Senate?

Karlin-Smith: Yeah. So there was — probably the most contentious health bill that cleared yesterday was a provision that basically would codify a Trump-era rule in Medicaid that the Biden administration has sort of tweaked a bit but generally supported that basically tweaks Medicaid’s “best price” rule. So Medicaid is kind of guaranteed the best price that the private sector gets for drugs. But drugmakers have argued this prevents them from doing these unique value-based arrangements where we say, “OK, if the patient doesn’t perform well or the drug doesn’t work well for the patient, we’ll kind of give you maybe even all your money back.” Well, they don’t want the Medicaid best price to be zero. So they came up with a kind of a very confusing way to tweak that and also as part of that to, you know, hopefully allow Medicaid to maybe even take advantage of these programs. And Rep. [Brett] Guthrie [(R-Ky.)], Rep. [Anna] Eshoo [(D-Calif.)] on the Democratic side, want to codify that. But a number of the Democrats pushed back and over worries this might actually raise prices Medicaid pays for drugs and be a bit more problematic. And the argument from the Democrats, the majority of Democrats on the committee who oppose it, were not completely against this idea but let it play out in rulemaking, because if it stays in rulemaking, it’s a lot easier to —er, sorry — as a rule, it’s already made.

Rovner: To fix it if they need to.

Karlin-Smith: Right. It’s a lot easier to fix it, which, as anybody who follows health policy knows, it’s not actually as easy as you would think to fix a rule, but it’s definitely a lot easier to fix a rule than it is to fix something codified in law. So that’s sort of a very wonky but meaningful thing, I think, to how much drugs cost in Medicaid.

Rovner: Last nerdy thing, I promise, for this week: The Biden administration says it plans to conduct an annual audit of the cost of the most expensive drugs covered by Medicaid and make those prices public in what one of your colleagues, Alice, described as a “name and shame” operation? I mean, could this actually work, or could it end up like other HHS [Department of Health and Human Services] transparency rules, either not very followed or tied up in court?

Karlin-Smith: Experts that my colleague Cathy Kelly talked to to write about this basically were not particularly optimistic it would lead to big changes in savings to Medicaid, basically. One of the reasons is because Medicaid actually gets pretty good deals on drugs to begin with. But that said, even, again, like I said, they’re guaranteed these really large rebates are the best price. But in exchange for that, they have to cover all drugs. So that’s where you start to lose some of your leverage. So the hope with some of this extra transparency is they’ll get more information to have, like, a little bit of additional leverage to say, “Oh, well your manufacturing costs are only this, so you should be able to give us an additional rebate,” which they can negotiate that. Again, I think people think there’ll be sort of maybe some moderate, if any, benefits to that. But some states have actually tried similar things in kind of similar “name, shame” affordability boards. And the drugmakers have basically just said, “No, we’re not going to give you any more discounts.” And they’re kind of stuck.

Rovner: “And we’re not ashamed of the price that we’re charging.”

Karlin-Smith: Right.

Rovner: “Or we wouldn’t be charging it.”

Karlin-Smith: So it’s a tough one, but there’s, like, an argument to be made that drugmakers just don’t want to be on this list. So maybe some of them will more proactively figure out like how to get their price point and everything discounts to a point where they at least won’t get on the list. So maybe, again, it might tweak things around the edges, but it’s not a big price savings move.

Rovner: And we shall see. All right. Well, this is — finally this week, it’s something I’ve wanted to talk about for a couple of weeks. I’m calling it the “How do you solve a problem like RFK Jr.?” For those of you who don’t already know, the son of the former senator and liberal icon Robert Kennedy has declared his candidacy for president. He’s an environmental lawyer, but at the same time, he’s one of the most noted anti-vaxxers, not just in the country but in the world. Vice has a provocative story — this actually goes back a couple of weeks — about how the media should cover this candidacy or, more specifically, how it shouldn’t. According to the story, ABC did an interview with RFK Jr. and then simply cut out what they deemed the false vaccine claims that he made. CNN, on the other hand, did an interview and simply didn’t mention his anti-vaccine activism. I am honestly torn here about how should you cover someone running for president who traffics in conspiracy theories that you know are not true? I realize here I am now speaking of a wider — wider universe than just RFK Jr. But as a journalist, I mean, how do you handle things that — when they get repeated and you know them to be untrue, at least in the health care realm?

Karlin-Smith: I mean, I really like the thing that Vice mentioned, and I think maybe Jay Rosen, who’s a journalism professor at NYU [New York University], he might be the person that sort of coined this, I’m not sure — this, like, “truth sandwich” idea, where you make sure you sort of start with what is true, in the middle you put the sort of — this is what the false claim of X person — and then you go back to the truth. Because I think that really helps people grasp onto what’s true, versus a lot of times you see the coverage starts with the lie or the falsehood. And I think sometimes people might even just see that headline or just see the little bit of what’s correct and never make it to the truth. And I understand some of the decisions by the news outlets that decided not to air these segments and just didn’t want to deal with the topic. But then I guess I thought they did make a good point that then you let somebody like Kennedy say, “Oh, they’re suppressing me, they’re deliberately hiding this information.” So the Vice argument was that this truth sandwich idea kind of gets you in a better … [unintelligible]. And again, as journalists, our job is not to suppress what politicians are saying. People should know what these people claim, because that is what the positions they stand for. But it’s figuring out how to add the context and be able to, you know, in real time if you need to, fact-check it.

Rovner: I confess, over the years I have been guilty of the CNN thing of just not bringing it up and hoping it doesn’t come up. But then, I mean, it’s true, the worst-case scenario — probably not going to happen with somebody running for president — but I think we’ve discovered all these people running for lower offices, that they get elected, you don’t talk about the controversial things and then you discover that you have a legislator in office who literally believes that the Earth is flat. There are — can Google that. So if these things aren’t aired, then there’s no way for voters to know. Anybody else have a personal or organizational rule for how to handle this sort of stuff?

Ollstein: I think there can be smart decisions about when to let someone say in their own voice what they believe versus saying as the news organization, “In the speech, he spent X minutes advancing the discredited assertion of blah, blah, blah, blah, blah,” and not just handing over the platform for them to share the misinformation.

Rovner: Yeah, I just want the audience to know that we do think seriously about this stuff. We are not just as sort of blithe as some may believe. All right. Well, that is this week’s news. Now, we will play my interview with Aneri Pattani, and then we will come back with our extra credits. I am pleased to welcome back to the podcast my colleague Aneri Pattani, who is here to talk about her investigation into where those billions of dollars states are getting in pharmaceutical industry settlements for the opioid crisis are actually going. Aneri, I am so glad to have you back.

Aneri Pattani: Thanks so much for having me.

Rovner: So let’s start at the beginning. How much money are we talking about? Where’s it coming from, and where is it supposed to be going?

Pattani: So the money comes from companies that made, distributed, or sold opioid painkillers. So these are places like Purdue Pharma, AmerisourceBergen, Walgreens, and a bunch of others. They were all accused of aggressively marketing the pills and falsely claiming that they weren’t addictive. So thousands of states and cities sued those companies. And rather than go through with all the lawsuits, most of the companies settled. And as a result, they’ve agreed to pay out more than $50 billion over the next 15 or so years. And the money is meant to be used on opioid remediation, which is a term that means basically anything that addresses or fixes the current addiction crisis and helps to prevent future ones.

Rovner: So the fact is that many or most states — we don’t actually know where this money is going or will go in the future because that information isn’t being made public. How is that even legal, or, I guess it’s not public funds, but it’s funds that are being obtained by public entities, i.e., the attorneys general.

Pattani: Yeah, a lot of people feel this way. But the thing is, the national settlement agreements have very few requirements for states to publicly report how they use the money. In fact, the only thing that’s in there that they’re required to report is when they use money for non-opioid purposes. And that can be at most 15% of the total funds they’re getting. And that reporting, too, is on an honor system. So if a state doesn’t report anything, then the settlement administrators are supposed to assume that the state used all of its money on things related to the opioid crisis. Now, states and localities can enact stricter requirements. For example, North Carolina and Colorado are two places that have created these public dashboards that are supposed to show where the money goes, how much each county gets, how the county spends it. But honestly, the vast majority of states are not taking steps like that.

Rovner: So for people of a certain age, this all feels kind of familiar. In the late 1990s, a group of state attorneys general banded together and sued the tobacco companies for the harm their products had done to the public. They eventually reached a settlement that sent more than $200 billion to states over 25 years, so that money is only just now running out. But it didn’t all get used for tobacco cessation or even public health, did it?

Pattani: No. In fact, most of it didn’t get used for that. The Campaign for Tobacco-Free Kids, which has been tracking that tobacco settlement money for years, found that about only 3% of the money goes to anti-smoking programs a year. The rest of it has gone towards plugging state budget gaps, infrastructure projects like paving roads, or, in the case of North Carolina and South Carolina, the money even went to subsidizing tobacco farmers.

Rovner: Great. Given the lessons of the tobacco settlement, how do the attorneys general in this case try to make sure that wasn’t going to happen? I mean, was it just by requiring that that non-opioid-related money be made public?

Pattani: So they have added some specific language to the settlements that they point to as trying to avoid, you know, the, quote, “tobacco nightmare.” Essentially, the opioid settlements say that at least 85% of the money must be spent on opioid remediation. Again, that term — that’s like things that stop and prevent addiction. And there’s also a list included at the end of the settlement, called Exhibit E, with potential expenses that fall under opioid remediation. That’s things like paying for addiction treatment for people who don’t have insurance or building recovery housing or funding prevention programs in schools. But the thing is, that list is pretty broad and it’s nonexhaustive, so governments can choose to do things that aren’t on that list, too. So there are guidelines, but there’s not a lot of hard enforcement to make sure that the money is spent on these uses.

Rovner: So, as you’ve pointed out in your reporting, it’s not always simple to determine what is an appropriate or an inappropriate use of these settlement funds, particularly in places that have been so hard-hit by the opioid crisis and that it affects the entire economy of that state or county or city. So tell us what you found in Greene County, Tennessee. That was a good example, right?

Pattani: Yeah, Greene County is an interesting place. And what I learned is happening there is actually, you know, repeating in a lot of places across the country. So Greene County, it’s an Appalachian county, it’s been hard-hit. It has a higher rate of overdose deaths than the state of Tennessee overall or even the country. But when the county got several million dollars in opioid settlement funds, it first put that money towards paying off the county’s debt. And that included putting some money into their capital projects fund, which was then used to buy a pickup truck for the sheriff’s office. So a lot of folks are looking at that, saying, “That’s not really opioid-related.” But county officials said to me, you know, this use of the money makes sense, because the opioid epidemic has hurt their economy for decades; it’s taken people out of the workforce, it’s led to increased costs for their sheriff’s office and their jail with people committing addiction-related crimes, it’s hurt the tax base when people move out of the county. So now they need that money to pay themselves back. Of course, on the other hand, you have advocates and people affected by the crisis saying, “If we’re using all the money now to pay back old debts, then who’s addressing the current crisis? People are still dying of overdoses, and we need to be putting the opioid settlement money towards the current problem.”

Rovner: So I suppose ideally they could be doing both.

Pattani: I think that’s the hard thing. Although $54 billion sounds like a lot of money, it’s coming over a long period of time. And so at the end of the day, it’s not enough to fund every single thing people want, and there is a need for prioritization.

Rovner: So I know part of your project is helping urge local reporters to look into where money is being used in their communities. How is that going?

Pattani: It’s going well. I think it’s important because the money is not only going to state governments, but to counties and cities too. So local reporters can play a really big role in tracking that money and holding local officials accountable for how they use it. So I’m trying to help by sharing some of the national data sets we’re pulling together that can be used by local reporters. And I’ve also hopped on the phone with local reporters to talk about where they can go to talk to folks about this or finding story ideas. Some of the reporters I’ve spoken with have already published stories. There was one just a week ago in the Worcester Telegram from a student journalist, actually, in that area —

Rovner: Cool.

Pattani: — so there’s a lot of good coverage coming.

Rovner: I’m curious: What got you interested in pursuing this topic? I know you cover addiction, but this is the kind of reporting that can get really frustrating.

Pattani: It definitely can. But I think it’s what you said: As someone who’s been covering addiction and mental health issues for a while, kind of focusing on some of the problems and the systemic gaps, when I learned that this money was coming in, it was exciting to me too, like, maybe this money will be used to address the issues that I’m often reporting on, and so I want to follow that and I want to see if it delivers on that promise.

Rovner: So what else is coming up in this project? I assume it’s going to continue for a while.

Pattani: Yes. So this will be a yearlong project, maybe even more, because, as I said, the funds are coming for a long time. But essentially the next few things I’m looking at, I have a big data project looking at who sits on opioid settlement councils. These are groups that advise or direct the money in different states and, you know, may represent different interests. And then we’re going to be looking at some common themes in the ways different states are using this money. So a lot of them are putting it towards law enforcement agencies, a lot of them are putting them toward in-school prevention programs, and taking a look at what the research tells us about how effective these strategies are or aren’t.

Rovner: Well, Aneri Pattani, thank you so much, and we will post links to some of Aneri’s work on the podcast homepage at kffhealthnews.org and in this week’s show notes. Thanks again.

Pattani: Thank you so much.

Rovner: OK, we’re back and it’s time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Sarah, why don’t you go first this week?

Karlin-Smith: Sure. I looked at a piece in The New York Times called “Heat Wave and Blackout Would Send Half of Phoenix to E.R., Study Says,” by Michael Levenson. And it’s just really sort of a horrifying piece where researchers were sort of able to model the impact of the growing frequency of heat waves due to climate change, and obviously, the U.S. had some electric grid stability issues, and just the disconnect between the amount of hospital beds and people that would be able to care for people in a very hot city due to, you know, heat waves without being able to access air conditioning and other cooling methods. And the amount of people that would be hospitalized or die or just wouldn’t have a hospital bed. The one thing I did think was sort of positive is the piece does have some suggestions, and some of them are fairly simple that could really change the degrees in cities in relevant ways, like planting more trees in particular areas, and often this affects sort of — the poorest areas of cities tend to be the ones with less trees — or, you know, changing colors or the material on roofing. So as much as sometimes I think climate change becomes sort of such an overwhelming topic where you feel like you can’t solve it, I think the one nice thing here is it does sort of show, like, we have power to make the situation better.

Rovner: We can perhaps adapt. Alice.

Ollstein: I picked a upsetting piece but really good investigation from Reuters by Michael Berens. It’s called “How Doctors Buy Their Way out of Trouble.” It’s about doctors who are charged federally with all kinds of wrongdoing, including operating on patients who don’t need to be operated on for profit and having a pattern of doing so. And it’s about how often these cases settle with federal prosecutors and the settlement allows them to keep practicing, and the settlement money goes to the government, not to the victims. And often the victims aren’t even aware that the settlement took place at all. And new patients are not aware that the doctor they may be going to has been charged. And so it’s a really messed up system and I hope this shines a light on it.

Rovner: Rachel.

Cohrs: All right. So mine is from ProPublica, and the headline is, “In the ‘Wild West’ of Outpatient Vascular Care, Doctors Can Reap Huge Payments as Patients Risk Life and Limb,” by Annie Waldman. And I think I found this story timed really well kind of as lawmakers do start to talk a little bit more about incentives for patients to be seen in a hospital versus in more physician offices. And certainly there are cost reasons that that makes sense for some procedures. But I think this story does a really good job of kind of following one doctor, who I think, similar to kind of the story Alice was talking about, you know, was taking advantage of these inflated payments that were supposed to incentivize outpatient treatment to perform way more of these procedures than patients needed. And so I think it’s just important, a cautionary tale about the safeguards that could be necessary, you know, if more of this care is provided elsewhere.

Rovner: Yeah, I think these two stories are very good to be read together. My story this week is from our fellow podcast panelist Joanne Kenen for KFF Health News. It’s called “Remote Work: An Underestimated Benefit for Family Caregivers,” and it’s about how the U.S., still one of the few countries without any formal program for long-term care, that most of us will need at some point, has accidentally fallen into a way to make family caregiving just a little bit easier by letting caregivers do their regular jobs from home, either all the time or sometimes. While many, if not most, employers have policies around childbirth and child care, relatively few have benefits that make it easier for workers to care for other sick family members, even though a fifth of all U.S. workers are family caregivers. More flexible schedules can at least make that a little easier and possibly prevent workers from quitting so that they can provide care that’s needed. It’s no substitute for an actual national policy on long-term care, but it’s a start, even if an accidental one. OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our ever-patient producer, Francis Ying. And next week is our 300th episode. If all goes as planned, we’ll have something special, so be sure to tune in. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m still there. I’m @jrovner. Sarah?

Karlin-Smith: I’m @SarahKarlin.

Rovner: Alice.

Ollstein: @AliceOllstein.

Rovner: Rachel.

Cohrs: @rachelcohrs.

Rovner: We will be back in your feed next week. Until then, be healthy.

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At best, a Colorado panel of medical and pharmacy experts seeking to cut the costs of expensive drugs will be able to help only one of them.

Starting this summer, the state’s Prescription Drug Affordability Board will choose up to 18 high-cost drugs for review over the next three years to determine if the medications are unaffordable and whether to cap what health plans and consumers pay for them.

But with hundreds of expensive drugs to choose from, the board members face tough decisions about who will get help now and who will have to wait.

Do they tackle drugs with extremely high costs taken by only a handful of patients, or drugs with merely very high costs taken by a larger group? Should they consider only out-of-pocket costs paid by consumers, such as for insulin, whose copays Colorado caps at $50 a month, or the total cost of the drug to the health system? Will they weigh only drug prices, or will they try to right social wrongs with their choices?

And what does “affordable” even mean?

“That question alone is a lot harder to answer than it might seem at face value,” said Jennifer Reck, project director for the National Academy for State Health Policy’s Center for State Prescription Drug Pricing. “You immediately get into how utterly complex our drug supply chain is, how opaque it is, how many different prices there are,” she said.

Maryland was the first state to establish a drug affordability board in 2019, but funding challenges and the pandemic have slowed its progress. Colorado passed a bill creating its board in 2021 and has already moved ahead of Maryland in the process. Washington followed in 2022 but is still in its early phases of implementation.

Maine, New Hampshire, Ohio, and Oregon have also established boards, but they lack the power to limit drug payments. And at the federal level, the Inflation Reduction Act of 2022 included a provision requiring the Health and Human Services secretary to negotiate prices with drug companies for a small number of the most costly medications covered by Medicare.

It’s taken years for the Colorado and Maryland board members to create all the rules and regulations to govern their work before getting to the point of looking at specific drugs.

“It’s just a long, tortuous government process to get things up and running,” said Gerard Anderson, a professor of health policy and management at Johns Hopkins University, and a member of Maryland’s board. “You basically have to dot every ‘i’ and cross every ‘t’ in order not to get sued.”

Setting Priorities

On May 12, Colorado released its first list of hundreds of drugs eligible for review, mostly because they each cost more than $30,000 for a course of treatment. Next month, they’ll release a dashboard ranking those drugs according to the board’s priorities. The dashboard can also be used to examine which drugs have the highest price tags, which have had the largest increases in price, and which the state spends the most on. That would allow the board to begin affordability reviews this summer and set payment limits for the first four to eight drugs sometime in 2024. But board members will first have to set their priorities, and those could change from year to year.

“Maybe one year we focus on the impact to the system, and another year we focus on out-of-pocket costs, and one year we focus on a lifesaving drug that has smaller utilization,” said Lila Cummings, director of the Colorado board.

Such approaches could pit one group of patients against others looking for cost relief. But Cummings said not all groups are eager to see payment limits.

“Some of them said, ‘We want the board to focus on our drugs,’ and others said, ‘Please leave us alone,’” she said.

That reluctance likely reflects the close ties that some patient groups have with the manufacturers of their medications, including receiving funding from the drugmakers.

“We have seen cases in public hearings — it seems counterintuitive or surprising — where a patient group, instead of being thrilled that they might have access to the drugs at a lower price, instead are arguing against upper payment limits,” Reck said. “But in most cases, there’s a pretty clear financial connection to drug manufacturers.”

Maryland has also received input from patient groups as it finalizes its regulations.

“So far it has not been, ‘Pick me! Pick me! Pick me!’” Anderson said. But that could change once the Maryland board begins its affordability reviews this fall.

The drug that Garcia, 47, of Denver, takes did not make the board’s list. Diagnosed with four bleeding disorders, including von Willebrand disease, he needs the medication Humate-P, made by CSL Behring, to replace one of the clotting factors missing in his blood. This winter, driving home from his job at the airport, Garcia hit a patch of black ice, spun out, and careened into a concrete barrier at 75 mph. He needed the expensive medication every day for the first five days after the accident, and then every other day for a full month.

“It’s not like I can just sit there and say no to this medication, because my bleeds get so bad,” he said.

According to Perry Jowsey, executive director of the National Hemophilia Foundation’s Colorado chapter, about 300 to 400 individuals are being treated for von Willebrand disease in Colorado. That’s far fewer than the roughly 10,000 Coloradans with MS or the 74,000 who manage their diabetes with insulin.

“In my shoes, I would target what would help the most people,” Garcia said. “You have to find a balance, especially starting out. You’re not going to be able to help everyone.”

The Colorado and Maryland boards will rely on data from state databases that show how much various public and private health plans pay for drugs. That data, however, doesn’t capture what uninsured patients pay, and it doesn’t give any insight into how much manufacturers pay for research and development.

“The goal is not to stifle innovation,” Anderson said. “But we can’t get any public data, so we have to ask the pharmaceutical industry, and they’re not required to give us the data.”

The boards want to ensure that patients like Reitzel still have access to new and better therapies. Reitzel, 38, of Highlands Ranch, was diagnosed with multiple sclerosis in 2008 and has switched medications several times seeking one whose side effects she could tolerate. “They’re all terrible in their own special way,” she said.

In 2021, she began taking a relatively new drug from Biogen and Alkermes called Vumerity, which was included on Colorado’s list of eligible drugs. But the cost of a three-month supply was nearly $24,000, including a copay of more than $7,000. Biogen provides up to $20,000 in annual copay assistance through a debit card she can use at the pharmacy. But now her health plan no longer credits those payments toward her deductible. It makes it almost impossible for her to meet the $25,000 out-of-pocket maximum under her plan.

“Primarily for this reason, I am no longer taking any medication,” Reitzel said, “and have to only hope my disease does not progress.”

Colorado legislators passed a bill to require health plans to count copay assistance programs toward patients’ deductibles for drugs with no generic equivalents, but that provision does not take effect until 2025.

Insulin as an Outlier?

Just a couple of years ago, insulin may have been a higher priority for drug affordability boards, but now it’s not so clear. Both Colorado and Maryland have established insulin copay caps that provide pocketbook relief, at least for patients with coverage. And manufacturers are making their own moves to lower insulin prices. That could prompt the boards to bypass insulin and concentrate their limited resources on other high-cost drugs.

Copay caps do not lower the actual cost of insulin but instead spread it among members of the health plan through higher premiums. The Colorado copay caps don’t help new state residents and initially did not help those without insurance, either. Both of those hurdles would have applied to Marquez-Farmer when she moved from California to Colorado Springs a couple of years ago.

“I got married to my husband during covid because I didn’t have insurance,” she said. “I loved him, and it all worked out, but a big reason for me to marry him was because I would not be able to afford insulin.”

Marquez-Farmer, 34, said that while insulin may not be the most expensive drug on the market, many Coloradans, particularly those from marginalized communities who have higher rates of diabetes, struggle to afford it.

“I’m not saying the other medicines are not important, because obviously they are,” she said. “The reality is there’s more people who are being affected by not being able to afford their insulin and a lot of people who are dying because of them rationing insulin.”

Andrew York, executive director of the Maryland board, said the payment limits should be viewed as a last resort, a tool that can be used when other cost-control measures haven’t worked.

“The goal is for folks to never be able to say that they can’t afford their insulin. And I think we may get there soon enough just because of how much is happening in that space,” he said. “So if that’s the case, then maybe boards don’t need to use the upper payment limit tool.”

At least one form of insulin was included on Colorado’s list of drugs eligible for review, but not the most commonly taken brand-name insulins. That precludes the Colorado board from addressing insulin costs more broadly.

The pharmaceutical industry has pushed back against the concept of payment limits, warning that drugmakers could pull out of states that set payment limits.

“The boards are acutely aware of this discussion point. The interest and the purpose of these boards is to increase access to the drugs, not decrease it,” York said. “But there’s kind of this game theory element of: How will manufacturers react?”

Reck discounted the notion that a payment limit would prompt a manufacturer to abandon a profitable market.

“Unfortunately, it’s kind of a scary message and it can be impactful on patients,” she said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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