Should Vaccines Be Free?

Ritu Kaur (6s):
That's why I always tell my MS warriors, my friends, my family and my MS Family, to always stay positive and advocate. You need to advocate for yourself and for the people around you. You never know who you're inspiring, whom you are helping.

Doug Badger (23s):
A 65-year-old on Medicare might have to pay $350 out-of-pocket for two shots is a crazy arrangement.

Terry Wilcox (34s):
Free vaccines for Medicare patients might lead to better health and lower healthcare costs. Is it possible? Find out next. Welcome to the Patients Rising Podcast. I'm your host, Terry Wilcox, Executive Director of Patients Rising, a hundred-thousand members strong organization of patients with chronic illness. I'm here with my cohost, Dr. Bob Goldberg, co-founder of The Center for Medicine in the Public Interest. Normally, we would make a good-natured joke about my wonderful co-host, Dr. Bob, but given the ongoing world events, the silliness didn't seem appropriate. We'll be refraining from that for today. If you are in need of some levity and humor, we've built-up quite the portfolio of Dr.

Terry Wilcox (1m 17s):
Bob jokes over the past two years. You can hear those, and get up-to-speed on several healthcare topics, by visiting our past shows.

Dr. Bob Goldberg (1m 26s):
You know, we do talk about politics on the show, Terry. Maybe we will want to do a segment. There's a lot of activity on the part of patient groups, pharma and somewhat, to sort of lend support. I hope we have the ability to discuss that going forward, but also we're going to continue to look behind-the-scenes at the latest health policy conversations that are happening in Washington. We focus on how these policies impact you, our listeners, and millions of Americans living with chronic disease.

Terry Wilcox (2m 0s):
Vaccines are a hot topic due to the ever winding-down pandemic. COVID-19 vaccines are free to all Americans, but that isn't the case for other preventative vaccines.

Dr. Bob Goldberg (2m 13s):
The whole idea behind no-cost vaccines, is that everybody should get them, because everyone should get vaccinated. I would assume that every health plan and health program covers them free-of-charge, right?

Terry Wilcox (2m 27s):
Well, you would think, but that thought-process does not apply to other vaccines, specifically for those covered by Medicare. This is where it gets complicated. Some are covered under Medicare Part B and others under Part D. It's not cut-and-dry and can ultimately leave a patient with a high bill for a shingles vaccine for example, which I am late for, because they are having a shortage.

Dr. Bob Goldberg (2m 51s):
Really?

Terry Wilcox (2m 52s):
Yeah. I can't get my shingles vaccine. Nobody has them in stock.

Dr. Bob Goldberg (2m 55s):
Yeah, so stuff has to be covered, but unlike commercial plans, under Medicare, they don't have to be available at no cost. That out-of-pocket, which can be hundreds of dollars, can discourage people from getting the vaccine, make them get sicker, meaning more healthcare costs at the end. There have been efforts to get Medicare to cover these preventative vaccines for patients, to keep people healthy and save the Medicare system money as well. I talked to my good friend, colleague, and fellow baseball aficionado, Doug Badger, about the pros and cons of covering preventive vaccines, COVID or not, in a recent paper.

Dr. Bob Goldberg (3m 37s):
He explains why Medicare and Medicare Advantage health plans have cost sharing in the first place.

Terry Wilcox (3m 43s):
Doug is great, and in case our audience missed it, he was part of our Politics of Healthcare Round Table discussion back in December. He rejoins the podcast up shortly, but first, this week's healthcare news headlines.

Robert Johnson (3m 59s):
In your health news, the congressional plan to spend more money on the nation's COVID-19 response has failed, at least for now. Democrats had wanted to spend another $15 billion on therapeutics, vaccines and testing. The COVID-19 Funding Proposal could be revived later, but as a standalone measure. A new study confirms the lingering effects of a COVID-19 infection, after following more than 1400 people over age 60, who survived the virus in Wu Han, China. Scientists found, that a year later, they continue to suffer a variety of problems, including dizziness, loss of smell and brain fog. The report, in JAMA Neurology, says the result could be more dementia cases worldwide as COVID-19 survivors grow older.

Robert Johnson (4m 45s):
An FDA plan, to increase the diversity of clinical trials, is failing to attract black people into studies for newly approved medicines. A new analysis, in Health Affairs, says black trial participants accounted for just one-third of the number required to ensure adequate representation. In fact, black people were underrepresented in 85% of all trials, and disease categories, except psychiatry. Finally today, the first person to receive a pig heart transplant has died. 57-year-old, David Bennett, received the transplant two months ago at the University of Maryland Medical Center. He was a candidate for the experimental surgery, because he was ineligible for a human heart, was on life support and out of other options.

Robert Johnson (5m 36s):
That's your health news update for this week, I'm Robert Johnson.

Terry Wilcox (5m 41s):
Now let's kick off today's conversation with new poll results that show how Americans are feeling the impacts of the ongoing healthcare worker shortage. Staffing is a major concern, especially for patients with regular checkups and appointments. A new CVS Health Harris Poll, from The National Health Project, polled over 2000 adults and found the following. Forty-five percent of respondents experienced difficulties booking an appointment. Twenty-five percent had treatments or surgeries delayed and one- third have a doctor now operating on reduced hours. All-in-all, being seen by a doctor is not so easy for patients right now.

Terry Wilcox (6m 24s):
So Bob, what is this about?

Dr. Bob Goldberg (6m 27s):
Well, there's a couple of things. First, there's a pent-up demand, so of course everything is going to be overbooked. That's one thing. Two, we still have the overhang of COVID, so there's a backlog of people that have to be treated before you get something. Third, the doctors are the ones that are voluntarily working on reduced hours. It's the lack of staff. We're dealing with burnout with nurses, and so on, so I don't know what we do about it. There's always going to be this kind of imbalance in shortages. I'd be interested to take a look into what people have said about their experiences getting an appointment before COVID and see what the data are.

Dr. Bob Goldberg (7m 12s):
I don't know. I don't think there's any real policy response except say, "I want to get my appointment on time." I try to get cosmetic surgery, get a facelift and nobody would believe I needed a facelift, so...

Terry Wilcox (7m 26s):
I don't believe you need a facelift, Bob.

Dr. Bob Goldberg (7m 29s):
No? Thank you. Of course, I went to a podiatrist, but that's a whole different story. Another big topic on this podcast, and past episodes, is the accelerated approval pathway. There are people out there who somehow think it's a bad thing for new drugs to get to patients faster, but we know it's critical for patients with rare and chronic illnesses. Frank Pallone, a representative from my state of New Jersey, introduced a new bill called the Accelerated Approval Integrity Act of 2022. It would modify the program, and we're following it, because of the impact it would have on the new drugs that patients are waiting for.

Terry Wilcox (8m 10s):
One of the things that it would do is expedite the requirements for data collection after it enters the market. This is an issue for rare disease drugs. You've seen rare disease drugs, and other drugs with smaller populations, but this is mostly rare disease drugs that have not been able to do the studies in a timely manner, because of lack of enrollment. What do you think about this? I think that we either need to change that or come up with other ways of measuring this.

Dr. Bob Goldberg (8m 46s):
You know, these confirmatory studies are a waste of time and money, in my opinion. These confirmatory trials, is what they're called, must show that drug X, that provides a clinical benefit, and then they grant traditional approval. That means doing another round of clinical trials. It makes no sense. We're in error where we're using real-world data to monitor, enhance and optimize the use of products in the marketplace. Why don't we do that? Does the extent that this bill moves in that direction, I'm all for it. To the extent that it's one more layer of regulatory delay and requirement, I wouldn't be supportive of it.

Terry Wilcox (9m 29s):
I agree with you on that, because I have always said, I do not understand why the FDA approval for safety and efficacy of a medication, isn't then followed-up with extensive real-world evidence data of actual people using it. I don't understand why there is another layer of clinical trials. Granted, that's not my wheelhouse, so I don't want to speak in an affirmative way on that like I know what I'm talking about, because I don't necessarily, but it sounds like exactly what you just said.

Dr. Bob Goldberg (9m 59s):
Yeah, it says the bill would allow the FDA to require studies to be underway, time of approval, and demand more frequent updates on post-approval trials. I don't know about this. I just think it's a busy work.

Terry Wilcox (10m 12s):
I think it's very politically-driven, because of Aduhelm. It seems like a lot of busy work to me.

Dr. Bob Goldberg (10m 20s):
Well, it's designed by the same folks that hate accelerated approval.

Terry Wilcox (10m 23s):
A lot of the attacks on accelerated approval have come after the FDA approved the new alzheimers treatment, Aduhelm. CMS has proposed to only cover the new treatment for patients enrolled in a clinical trial, as we've talked about before on the podcast, would severely limit access to only those living near a clinical trial site. Many alzheimer's advocacy organizations are frustrated with the lack of accessibility of this requirement to be near a clinical trial site. There's going to be a Rally for Access held in Washington, DC next week. It will feed your caregivers, alzheimer's disease patient advocates, members of Congress and more.

Terry Wilcox (11m 6s):
If you're a local advocate, and want to learn more, head to the show notes, we'd love to have you there. Let's switch to our main topic of today - Cost sharing requirements for preventative vaccines.

Dr. Bob Goldberg (11m 22s):
The cost sharing requirements, Terry, is an artifact of the way that Medicare was designed. Doug Badger, who worked in the Bush Administration on Medicare reform, and on the Prescription Drug Benefit, wrote a paper for the Galen Institute, looking at the reasons, the wherefores, and the pros and cons of eliminating the out-of-pocket costs for vaccines in Medicare. Once you start talking about Medicare, you go down the rabbit hole of why some things are covered under one provision and another. Here's Doug doing a heroic job explaining why some people are caught in a coverage gap and a cost sharing gap.

Doug Badger (12m 9s):
Preventive vaccines generally are really a mixed bag. Some are covered under Medicare Part B, which is the traditional Medicare program that you pay a monthly premium for. Others are covered under Part D, which is where you sign-up for a competing drug plan, either directly, or through your Medicare Advantage Plan. The Part D program is the only insurance in the country where you can have a copay for a preventive vaccine. A 64-year-old who has private coverage, whether through an employer or through Obamacare, can get their shingles shots for free.

Doug Badger (12m 56s):
A 65-year-old, on Medicare, might have to pay $350 out-of-pocket for the two shots. It's a crazy arrangement, and it's one that I've argued in this paper, that Congress should address.

Dr. Bob Goldberg (13m 9s):
Well, let's stick with the shingles example in large part, because you've talked about shingles. The cost of the vaccine is not just less than what a potential hospital bill would cost, but not only does it improve your health, but it also reduces costs. I asked Doug about how waiving the cost-sharing requirements would impact Medicare patients across the board.

Doug Badger (13m 36s):
If you've known anyone who has had shingles, it can range anywhere from extreme pain and discomfort, to hospitalizations and worse. The vaccine appears to be very, very effective in preventing that. You've got to look at the cost of the vaccine, but you've also got to look at the money Medicare doesn't have to spend. They see a net cost. It rounds to around 300 million over ten years. CBO took a look at a provision that they say is 3.3 billion. Unfortunately, they don't specify is that 3.3 billion gross- costs to Part D, or are they also taking into account offsetting savings?

Doug Badger (14m 20s):
Our point is, whatever the cost, you need to offset it with savings elsewhere in the Medicare program. The Medicare program is not in good financial shape, and while it makes sense to have preventive vaccines covered fully without requiring cost sharing, if there's additional spending there, you have to find offsetting savings elsewhere. The last thing we want to do is to make Medicare even more financially troubled.

Terry Wilcox (14m 52s):
I definitely understand his point about the cost offsetting. They seem to be really bad at that. Like you've always said, Bob, it would be great if taking medicine was 25% of our healthcare costs, because that would mean our hospitalizations and other stuff would go down, right? That's not always the case. They're not good at the offsetting.

Dr. Bob Goldberg (15m 11s):
They're not good at doing the analysis, and they sort of shy away for that, because then it falls into this notion of it has to be a really hard number on the one hand. On the other hand, then be able to say, Build Back Better would only cost half if we just funded it for five years, as if that's really going to happen. That's scorable. That's something the CBO would account for, but regardless of the case, these preventative vaccines do save money, even if only 10 or 20% of the people that didn't take it got sick.

Terry Wilcox (15m 45s):
I think a lot of patients, and frankly anyone who uses insurance, has questions about cost sharing. I have it every time I go to the doctor, especially why some drugs are covered completely, and others have an out-of-pocket cost.

Dr. Bob Goldberg (16m 1s):
Exactly. I asked Doug about that, and why Medicare imposes cost sharing for certain vaccines, and here's why.

Doug Badger (16m 14s):
Cost sharing, as you know, has the role of what you're trying to do is prevent overuse or improper use of a service. The problem with cost sharing for preventative vaccines is that it's discouraging proper use of a preventative service. It's not like somebody's going to go and say, I want five shingles shots. The course is defined by the ACEP, the CDC's advisory committee, that is a two-dose course for people 50 and older. You get your two doses, and you're not only preventing something that could turnout to be very painful and difficult for you, you're also potentially saving the government some money in terms of medical costs.

Doug Badger (17m 4s):
So, you have to be rational with how you think about cost sharing. They're starting to experiment in some of the Medicare Advantage Plans where certain medicines, for example diabetics, make it less likely that they all have exacerbations and require emergency room visits. We'll just eliminate the cost sharing for that, because it doesn't do us any good to say, "Well, you've got to spend $50 a month on this drug", the patient doesn't take it and now they're in the ER in six weeks. So, you have got to be smart about these things.

Terry Wilcox (17m 38s):
I mean, of course, and sometimes they're not rational about those things.

Dr. Bob Goldberg (17m 43s):
No, they're not rational at all.

Terry Wilcox (17m 44s):
That is true about diabetics. That is a good thing not to require cost sharing on. I can speak from my father's history to that and that was with most of his medication paid for. He still was a brittle enough diabetic that he ended-up in the hospital pretty often as he got older. So what do you think, Bob? Do you think that they will do more cost sharing or do you just think it's not in their wheelhouse to do this, because they can't get an exact number, like you were talking about earlier?

Dr. Bob Goldberg (18m 19s):
The whole issue of cost sharing, if Congress is interested in doing an easy fix for political purposes and eliminating cautioning for Medicare, the vaccines is one way to do it starting with COVID and other products. The problem is, it's all built-up into the budgeting issue, so I think it's on the radar. Will it be addressed? Not immediately. Most of the Medicare Advantage Plans do offer these vaccines free-of- charge. My shingles vaccine was free and influenza vaccine, so the private sector is already moving ahead where the government hasn't.

Terry Wilcox (18m 56s):
Well at the top, Doug outlined the mixed-bag of free vaccines under Medicare. Some are covered under Part B, as you just said, others under Part D, so what's the path forward for Medicare patients?

Doug Badger (19m 15s):
There's two things you could do. You could either put coverage on all preventive vaccines in Part B, where there is no cost sharing requirement, and that's the recommendation of Congress's advisory arm called MedPAC. They've suggested that Congress do that. The other thing you could do is, just say to the Part D plans, no cost sharing for vaccines. That's something they can do relatively easily, because the pharmacy benefit managers, that are participating in Medicare Part D, are also offering prescription drug coverage in their commercial markets to employers and individuals.

Doug Badger (19m 58s):
There, they're already required to cover the preventive vaccines without cost sharing. Do one of two things. Either eliminate cost sharing in Part D, or move all prevented vaccines in Part B, but one way or the other, let's not hit seniors with a potentially fairly large copay for getting vaccines that would prevent serious illness.

Dr. Bob Goldberg (20m 21s):
The thing I kept on bringing up to Doug, and our discussion was benefit design is dumb. I mean, it's so crazy. MedPAC says, cover all these vaccines in Part B, but then don't pay for accelerated approval drugs, pay a lower rebate. We have got to rationalize benefit design around what's best for patients, and what's best for patients based upon the right drug, right treatment and the right time, is what ultimately will be best for the sustainability of a program like Medicare. I'm tired talking about it.

Terry Wilcox (20m 54s):
Oh, I can't stress it enough. I say this all the time. We do have a healthcare cost crisis in this country and refuse to say it's all drug pricing. It's not because of our funders, but the bigger crisis that we have, which if we did that right, we probably wouldn't have all this waste in the cost of healthcare. There's a lot of things we could do there. We have a benefit design crisis and it's not just commercial benefit design. It's all benefits design. It's Medicare's benefit design, it's Medicaid's benefit design. There's a benefit design crisis that goes against what is best for the patients who need it to work.

Terry Wilcox (21m 35s):
If we focused on that, I can't say it enough, I say it too much.

Dr. Bob Goldberg (21m 39s):
No, we don't say it too much. No one else in the beltway constellation is focusing on benefit design and that's where healthcare costs and value rise and fall.

Terry Wilcox (21m 56s):
If you want to learn more, we have the link to Doug Badger's full report in the show notes, along with all the other stories covered today. This episode of the Patients Rising Podcast is brought to you by Patients Rising Concierge, a new service from Patients Rising, that helps patients and caregivers find the resources they need to find stability and support throughout their healthcare journey. From finding a professional advocate to help with insurance challenges, to legal and tax council, to local caregiving resources and so much more.

Terry Wilcox (22m 43s):
Our team is standing by to help you navigate the healthcare system and connect you to the services you need. To learn more, visit patientsrisingconcierge.org or email us at askusanything@patientsrising.org. Up next, Field Correspondent, Kate Pecora, continues to speak with patients, advocates, and caregivers from all across the country. In recognition of Multiple Sclerosis Awareness month, Kate spoke with MS advocate, Ritu Kaur, who's taking her advocacy to a global level. Take a listen.

Kate Pecora (23m 8s):
Today I'm talking with Ritu Kaur. She's going to share a little bit about herself, and her journey with MS, and then talk a little bit later about how her efforts in the MS community are making an impact in India. So nice to talk with you Ritu.

Ritu Kaur (23m 26s):
Thank you for this opportunity, and it's a great pleasure meeting you, and speaking to you here. When you talk about MS journey, it said that some things can never be taught, they must be experienced. You'll never learn most valuable lessons until you actually experience it yourself and so how was my MS journey. When I was diagnosed with MS, that was ten years back, I did not know what MS was at that time. I was fortunate that my family was very supportive. My sister is a doctor. She's a neuro specialized physical therapist, so she could actually understand what problems I have and what symptoms I have.

Ritu Kaur (24m 9s):
She spoke to the doctors and told the doctors, please get her tested for MS, which the doctors were not doing at that time. So, I had a person to guide me, but unfortunately I saw that there were millions of others who have similar symptoms, but they never have such guidance and support of the family. So what about them? One thing was that I was diagnosed Christmas time in 2012. I thought, do not to take it like a punishment, but take it like a strength or a reason to do something like a gift from God. I said, okay, let's do something. My family was pretty supportive. My brother was always tech savvy, so he said, let's do something. Let's create awareness for those kinds of people that you are feeling for.

Ritu Kaur (24m 55s):
So, I started my journey of creating MS right after my diagnosis. I was new to MS and I did not know what MS was, but along with creating awareness, I started learning a lot about it. That's how my journey continues.

Kate Pecora (25m 9s):
You specifically work with MS Awareness Advocacy, and I think that's great, but it's kind of within a niche community. Obviously, you support the broad MS community, but you're also working for awareness-effort, specifically within India. Could you talk about some of the reasons for doing that, and the reasons that you felt that there was an unmet need there, and what your efforts have done to kind of fill that gap?

Ritu Kaur (25m 32s):
The thing was that since I was Indian, and this was before my diagnosis, I met around 10 to 12 doctors and none of them could actually understand what I had. They just saw me. They did not even check me properly as to why I'm having these symptoms. So I thought, what about the people who have similar symptoms like me and do not find a doctor who can understand them. I also understood that the medicines in India for MS were really, really, really expensive, so what about the people, since India is a place where people do live below the poverty-line as well, what about those kinds of people who cannot afford the medicines?

Ritu Kaur (26m 15s):
What about the people who cannot afford the fees of visiting the doctor's office, what about them? There's a big gap there. I said, I have to use my skills. I'm a marketing professional myself. I said, I want to do something for the society. I cannot go and donate money, but why not just use my skill to help people. That's how I started doing this work of awareness. I wanted to reach out to many people, and you have to trust me on this, when I started my pages on Facebook, Instagram, YouTube and so on, I did not get any traction from India. I did not get followers from India.

Ritu Kaur (26m 56s):
It was from around the world. Later on, I saw people started messaging me in person and started writing, "Thank you very much, are you really from India, because I've never seen anybody talking about MS openly the way you do." They just took me like an inspiration, or some of them started calling me "the elder sister", and started coming to me for guidance. Even Indians living abroad, started reaching out to me personally, and I made a point to message and reply to each and every one.

Kate Pecora (27m 30s):
I want to talk more about that awareness effort that you have specifically created. I know you have your social media channels, Instagram, Facebook, Twitter, those types of things, but you also have a podcast. It's called 10 Minutes for MS, and I believe the season is already out on it. With that, could you share some of the stories that you've learned through that podcast, that you found to stay with you after the interview was over.

Ritu Kaur (27m 60s):
So my podcast, 10 Minutes for MS podcast, is focused on medical professionals. In this podcast, right now I do not do an interview with the patients. It's only for the medical professionals. I know that there are so many questions that people have, so those questions are put up to them and they answer them. I see that the learning never stops. Every podcast episode gives me something to take away with. For example, it's not just a medically knowledgeable podcast, but it's also a very inspirational podcast in many ways. For example, I had a podcast with Mr. Rasmasa. Mr. Rasmasa is an inventor of flaxseed oil.

Ritu Kaur (28m 42s):
The kind of background he has come from, the world war circumstances, his childhood and what he has done. Now he is the father of flaxseed oil. It was not only about Omega 6 and Omega 3's, it was not about that. It was more about an inspirational journey and how to be positive in every circumstance. Imagine a boy who was small. He was young. He has seen people at war, people dying, people not dead on the ground. Yet today, the kind of person he has become, and the kind of mark he is leaving on society, is something which I really, really admire.

Ritu Kaur (29m 25s):
I have taken from that, if you're living your life, you should have a reason and a motive and not leave a mark behind in society. That's why I always tell my MS warriors, my friends and my family, my MS family, to always stay positive and advocate. You need to advocate for yourself and for the people around you. You never know whom you're inspiring, whom you are helping.

Kate Pecora (29m 52s):
Can I wrap-up by just asking how you're doing? How are things going with your progression? Are you in a relapse right now? How are you doing?

Ritu Kaur (30m 3s):
Yeah, I'm doing fine. Thank you so much for asking, but in January of this year, on New Year's Eve, I had a relapse. I had two problems. I had got new symptoms, which I never had in last 10 years, so that was right off. I always tell people to stay positive, but being in that position, and not being able to move and getting injections and bruising your hands, still staying positive is such a difficult thing to do. I always want to just wrap-up by saying that you have to stay positive. Even if right now you are in pain, don't be scared or don't fear to express it, because that is a need right now.

Ritu Kaur (30m 48s):
If you express, if you cry out your feelings, you will be fine. You'll feel good inside, but also have the hope that tomorrow will be a new day. Tomorrow you will be like before, so stay positive. I am also positive, and that's how I'm living my life with MS the last 10 years. Not knowing what will happen tomorrow, but I know whatever it is, it is going to be better than today.

Kate Pecora (31m 11s):
That is so awesome and I appreciate hearing that. You have such a great community behind you who's able to share it, with whatever stories you're able to talk about with each other. I'm very happy for you. Obviously, I wish you the best over the next couple of months, and it was great to talk to you and to hear about all of the great work that you're doing.

Ritu Kaur (31m 37s):
It was a pleasure talking to you.

Dr. Bob Goldberg (31m 38s):
Thank you for sharing your story with us today. We have lots of ways that you can get involved and help bring our issues to the attention of policymakers in Washington, DC and around the country. We'd really, really appreciate it if you would take a minute to visit the episode show notes and see all the other ways you can share your story with us.

Terry Wilcox (31m 58s):
Thank you for joining us for today's episode. If you've been enjoying the show, let us know by leaving us a rating and a review. We might even read it on air. You can also share the episode, which helps us reach more patients just like you, and gets us in front of more of the people involved in crafting healthcare policy.

Dr. Bob Goldberg (32m 19s):
Make sure you're following the Patients Rising Podcast on your favorite podcast app. That way you won't miss out on future episodes.

Terry Wilcox (32m 19s):
We'll be right back here next Friday with a new episode. Until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy.