March 18, 2022

Congress’ Healthcare Showdown

Congress’ Healthcare Showdown

Healthcare discussions in Washington are in full swing this week. Both the House and Senate meet to discuss a multitude of bills affecting everyday Americans, specifically those with rare and chronic diseases. Hosts Terry Wilcox and Dr. Bob break down...

Healthcare discussions in Washington are in full swing this week. Both the House and Senate meet to discuss a multitude of bills affecting everyday Americans, specifically those with rare and chronic diseases. Hosts Terry Wilcox and Dr. Bob break down the D.C. lingo and highlight three healthcare bills that will shape access to care and elevate patient voices: Cures 2.0, the BENEFIT Act, and the STAT Act.

Lastly, what does the future hold for telehealth appointments? The use of telehealth medicine has skyrocketed, but does your insurance cover it? Hear from Monica Bryant, Chief Operating Officer at Triage Cancer, who gives the must-ask questions patients should ask of their insurance plan to find out if they’re covered. 


Terry Wilcox, Executive Director, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Kate Pecora, Field Correspondent


Monica Bryant, Chief Operating Officer Triage Cancer


Benefit Act

Cures 2.0 


What is Telemedicine | Will it be accessible to those who need it most?

Senate Hearing: Prescription Drug Price Inflation: An Urgent Need to Lower Drug Prices in Medicare

House Hearing: on "The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight" | Democrats, Energy and Commerce Committee

Triage Cancer

What is “Telehealth” & Does Your Insurance Cover it?  Resources 

Telehealth Has Played an Outsized Role Meeting Mental Health Needs During the COVID-19 Pandemic

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1 (6s):
As we begin this hearing, this is a far more exciting opening statement, because we're here today to discuss proposals designed to increase American biopharmaceutical innovation. A goal I think we confidently all say we share.

Monica Bryant (19s):
You can't assume that you do, or don't, have coverage for telehealth. You actually have to seek-out that information from your insurance provider to figure-out how they will, or won't cover, the telehealth.

Terry Wilcox (33s):
After a busy week for healthcare on Capitol Hill, we're here with a crash-course on several bills that will directly impact patients. Plus, tips for understanding your insurance coverage for telehealth appointments. That's up 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, the guy who got Tom Brady to come back out of retirement. The one-and-only, Dr. Bob Goldberg, co-founder of The Center for Medicine in the Public Interest. Did you really do that, Bob?

Dr. Bob Goldberg (1m 12s):
I certainly did! Actually it wasn't me. I talked to Giselle about it, you know we're on a first name basis, and decided that Tom should get out there for one more season. You know, he's got unfinished business, but we do have unfinished business, like Tom Brady, here at The Patients Rising Podcast. Thankfully, although it hasn't made your life any less hectic, Congress has been a little bit quiet when it comes to healthcare. This week, the Senate held sort of a group chat, or a hearing, on prescription drug prices. Geez, never had one of those before and the House looked at a long, long, list of healthcare bills currently considered by the House Energy and Commerce Committee.

Dr. Bob Goldberg (1m 57s):
So, we're going to do our best to break-down what this all means. The proposed legislation, what it means for access, affordability, and of course, transparency for healthcare.

Terry Wilcox (2m 8s):
Well, Bob, you mentioned a huge laundry list of bills, that the Energy and Commerce Committee reviewed last Thursday. Needless to say, there is way too much for us to cover in one show. That's why we're taking a look at a few bills that are key to patients with chronic and rare illnesses.

Dr. Bob Goldberg (2m 26s):
Right? And we're also gonna talk about telehealth today and what you need to know about your coverage, or lack of coverage, for virtual doctor's appointments.

Terry Wilcox (2m 37s):
It's become a staple for all patients during the pandemic. Monica Bryant, Chief Operating Officer and cancer legal expert at Triage Cancer, shares what to know about your health plan and telehealth. Telehealth is in the spotlight recently too, with certain telehealth flexibilities brought on by the pandemic, and set to expire, which would limit coverage for many patients. All of that, and more, will be up shortly, but first this week's healthcare news headlines.

Robert Johnson (3m 8s):
In your health news, a new CDC report says tobacco use among US adults is down, but almost one-in- five still smoke or dip tobacco products. The survey found 19% of adults still using tobacco in 2020, down slightly from 20.8% in 2019. It's the lowest rates since 1965. People who live in rural areas have higher rates, as do those with less education, income and people on Medicaid. A reported decline in cases of tuberculosis, during the first year of the pandemic, offered hope to those fighting the disease. Another CDC report says the 20% decline in cases may be too good to be true.

Robert Johnson (3m 51s):
Experts are trying to understand how early COVID-19 mitigation, like masks and lockdowns, may have curved the disease, and whether that also caused cases to be missed, because of delayed or canceled doctor visits. Drug maker Moderna, said late this week, that it wants emergency FDA approval of a second COVID-19 booster for all adults. There continues to be a debate about how long vaccines provide protection against the virus. Pfizer made a similar request earlier in the week, seeking approval to give another dose only to those people over age 65. The news about vaccines comes as experts worry another COVID spike might be on its way to the US. They're watching cases climb in Europe again, adding wastewater studies show more viruses in some areas here.

Robert Johnson (4m 35s):
Infections, hospitalizations and deaths are all down, but there's concern the current lull is the calm, before yet another, virus storm. That's your health news update for this week, I'm Robert Johnson.

Dr. Bob Goldberg (4m 53s):
So Terry, as we mentioned at the top of the show, healthcare did get some play on Capitol Hill this week. What was going on?

Terry Wilcox (5m 1s):
That's right and it's a ton of information to slog through. So instead of sitting through hours of debate on C-SPAN, we are going to highlight three bills and break them down for you. If they're passed, they could lead to healthcare changes that would impact patients and caregivers like you, so let's get into it.

7 (5m 25s):
Today, our subcommittee examines twenty-two, mostly bi-partisan bills, to speed the discovery of more cures, improve patient representation and clinical trials, and enhance the FDA's ability to fulfill its vital mission of ensuring the safety, efficacy and quality of America's drug supply.

Dr. Bob Goldberg (5m 45s):
First up, there's a bill with the goal of incorporating more patient data and real-world experience into the FDA's review process. It's called the BENEFIT Act and you'll see that there's an obsession with acronyms in the naming legislation here. It stands for the Better Empowerment Now to Enhance Framework and Improve Treatment Act.

8 (6m 10s):
We are not proposing to change the FDA review process or ask how the patient experience data influenced a specific review decision. Rather, the BENEFIT Act was simply to have FDA describe if they receive patient experience data and how it was incorporated in the review process.

Dr. Bob Goldberg (6m 32s):
So what does it do? The BENEFIT Act would require that the FDA use patient experience, or patient drug development data, when creating the benefit risk framework for a drug. That means, let's take the totality of the patient's experience and weigh it against any risks, or side effects, that the patient might confront. Now, the reason they're doing it, and right now it's not required, is a nice thing to have. Sometimes it is suggested in the agreements, that a company will have on an individual basis, but getting this patient data in would be hugely important. It will change whether or not they approve a product, but also incentivize the biotech and pharma companies, to begin to capture and use that real-world data sooner, and more consistently, throughout the development process.

Dr. Bob Goldberg (7m 27s):
The bottom line is, (a) It would give the patients another way to shape the clinical trial design and also the outcomes. Secondly, it moves us away from, what Terry and I think is sort of an antiquated approach of, get a clinical trial done for an indication and then do another clinical trial to see how the patients are experiencing. Let's use real-world data from the get-go and use that to incentivize more patient participation, and frankly, more patient control over how the drugs will help people.

Terry Wilcox (8m 4s):
This seems to me like a no-brainer. It's not creating another entity.

Dr. Bob Goldberg (8m 9s):

Terry Wilcox (8m 10s):
It doesn't seem to be creating more bureaucracy, but rather giving more options. Am I missing something?

Dr. Bob Goldberg (8m 20s):
No, absolutely not. It doesn't impose any additional regulatory, or statutory requirements on the FDA, except to add this to the way in which most drugs are being developed. The FDA is already moving in that direction, and if it does get attached to some money, I'm sure that will help move things forward.

Terry Wilcox (8m 41s):
Well, we're pro-BENEFIT Act. Let's move on to the second piece of legislation we're focused on today. Surprise, surprise, it's another acronym! Whoever creates these acronyms probably has the most fun job on Capitol Hill, but I digress. This one is called the STAT Act, which stands for Speeding Therapy Access Today Act.

9 (9m 7s):
There are over 7,000 known rare diseases and yet 95% of them do not have an FDA approved treatment. The STAT Act's goal is to increase rare disease therapy development and increase access to treatments, and cures, for patients. One of the pillars of the bill is the creation of a rare disease and condition drug advisory committee, which advocates believe, would help strengthen FDA's rare disease activities.

Terry Wilcox (9m 35s):
So what it does, like the BENEFIT Act, it seeks reforms within the FDA. However, this Act focuses on expediting approvals for rare disease therapies and helping patients access those therapies quickly. Now, how does it do this? It will create a rare disease and condition advisory committee of patient representatives and experts. They will advise the HHS secretary, currently Secretary Becerra, on key issues facing rare disease patients, clinical trial design, regulatory pathways, things like that. In an important step for access, the bill will enact efforts to see that health insurance policies provide coverage to the populations that the FDA identifies as target-populations for certain therapies.

Terry Wilcox (10m 23s):
I got an email in my inbox earlier this week from Every Life Foundation. This was one of the acts that they were really pushing for Rare Disease Week and they had great success around it. I do know, for the most part, people are for the STAT Act, but there is some trepidation of starting more bureaucracy. Sometimes that scares people. Like is that ultimately going to bog it down? Is it going to make more lanes and issues, but for the most part, it seems to be heavily supported.

Dr. Bob Goldberg (10m 57s):
Now last, but not least, this sort of intersects with everything else we talked about - Cures 2.0. This is the new, improved, version of the 21st Century's Cures Act.

7 (11m 12s):
It ensures that our federal public health agencies are working seamlessly together to move new cures through the research stage all the way to FDA approval and Medicare coverage.

10 (11m 25s):
Cures 2.0 includes provisions encouraging greater use of RWE to solve for the medical product development and approval problems of today.

Dr. Bob Goldberg (11m 32s):
We can go back in history about six years, and tell you what was in the original law, which was passed in 2016. Again, use of Real World Evidence to speed review processes, enhance the role of patient voices in the FDA review process, and it was designed to use alternative trial designs, not wedded to the randomized clinical trial. Using more real-world data, and observational studies, properly controlled to speed-up the review and approval of medical devices and new drugs. There's a flurry of these. They all have the same theme which is, we're going to improve upon and build upon, Cures 2.0,

Terry Wilcox (12m 18s):
Medicare has to cover devices approved under the FDA's breakthrough devices program for a four-year transitional period and CMS should then establish a process for continued coverage at the end of the transition period. This includes the Telehealth Modernization Act, which will expand practitioner's eligibility to provide telehealth services, and enhance telehealth services, in rural health clinics. It will also eliminate Medicare's originating site restrictions to improve virtual access including the home of the individual who is eligible for a telehealth service. Here's the bottom-line for patients. The telehealth provisions would definitely help patients, especially rare disease patients with unique specialists, and it would help them to connect with their providers remotely.

Terry Wilcox (13m 11s):
You can check out the show notes for more on all of these bills, and how you can write your member of Congress, and ask them to support these policies. 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 (13m 58s):
Our team is standing by to help you navigate the healthcare system and connect you to the services you need. To learn more, visit or email us at

Dr. Bob Goldberg (14m 10s):
We closed-out our discussion with telehealth, which continues to be on the upward trend, even after the pandemic. For lots of patients, including and especially those with rare diseases, telehealth can allow you to see any specialist regardless of where they are and depending upon the kind of healthcare advice or support they need.

Terry Wilcox (14m 29s):
Knowing if telehealth services are covered on your health plan isn't always clear. To help us out, I spoke with cancer legal expert, Monica Bryant at Triage Cancer. Take a listen. Monica, thank you for joining us today. We're so glad to have you here again. It's always fun to have Triage Cancer on.

Monica Bryant (14m 50s):
Always happy to come and chat.

Terry Wilcox (14m 54s):
Today we're going to talk about telehealth. It's become, or it became, extremely popular during the pandemic. We also realized, during the pandemic, how beneficial it is. More people now have used it than had used it prior to March of 2020. What is telehealth and what are the best sources of telehealth?

Monica Bryant (15m 19s):
Telehealth is really an umbrella-term to describe getting certain medical or health services from a provider who's not physically in the same room as you. It could be video conferencing. It could mean an E visit where you have some sort of patient portal where you can securely email back-and-forth between you and the provider. Sometimes it's even a phone call, or a text exchange, could be considered a type of telehealth. In terms of sources, there are occasionally options for people to get telehealth services from their regular provider.

Monica Bryant (15m 59s):
So, I have a primary care physician through Loyola Medicine and I can ask for a telehealth visit. It's very similar to what it would be like if we were in the same room. There are also some standalone services, where you don't really have a pre-established relationship with a provider, but you just sign up. Typically you pay a flat fee. Many people will utilize these for an urgent care situation. Like, I have a UTI, or something where it's an acute service that they need, and they don't really need to go to an actual doctor, or have the ability to wait for an appointment with their primary care physician.

Terry Wilcox (16m 44s):
What are the biggest barriers to telehealth?

Monica Bryant (16m 48s):
Given that the original concept was to provide basic care to rural, and underserved patients, telehealth is incredibly useful for those populations. Studies have shown that telehealth is really efficient and a cost-effective way to deliver an access quality health care services. There's benefits to both the providers, and the patients, like preventing unnecessary emergency department visits or prolonged hospitalizations. Even with all those benefits, there are definitely still those barriers. I think general lack of knowledge about the availability of telehealth, how to access the services, and then what types of healthcare can be obtained virtually.

Monica Bryant (17m 28s):
That's not always intuitive to people.

Terry Wilcox (17m 29s):
Do you think there's anything that we can do as advocates to help increase the ability for underserved communities to access it or be aware of it? Maybe it's just an education piece. Do you have any thoughts on that?

Monica Bryant (17m 46s):
I think that they're like most of the solutions that we come up with in the advocacy community, it has to be multifaceted. Are there community organizations that can be helpful in providing devices for somebody to be able to access care? I think another option is to engage in some legislative and policy advocacy. Some states require, that in order to be a telehealth appointment, there has to be a video component to it. Certainly using video is going to use up more data on somebody's mobile device than just a phone call. So relaxing some of those requirements, in a way that still makes sure that the patient is protected and that the health care team is protected, could help minimize those barriers.

Terry Wilcox (18m 37s):
What about insurance coverage on telehealth under when we're looking at employer plans, or individual plans, does it vary from provider to provider?

Monica Bryant (18m 47s):
Absolutely, and not just from provider to provider of insurance, but the type of insurance that somebody has. When you're talking about individual, or employer plans, there are many things that fall under that umbrella. I will say, there isn't a bright line rule about coverage for telehealth, sold by private insurance companies. Prior to COVID, forty-one states and DC, had some law about if insurance companies were required to reimburse providers that give patients telehealth services. Post COVID, or since COVID, we've definitely seen a patchwork of changes.

Monica Bryant (19m 27s):
Some insurance companies are only providing coverage if the need for the virtual visit was due to COVID. Some allowed coverage for preventative services and mental health services. I think that was primarily to make sure that people were able to still access those services, but not have to physically go into a hospital and be exposed. Some companies chose to eliminate out-of-pocket costs if people used telehealth, and we saw some other changes, again, relaxing the rules of where someone could actually be for an appointment. So pre-COVID, some companies said you can get telehealth, but only if you were in an assisted living facility. Those requirements were relaxed to allow people to get telehealth from home.

Monica Bryant (20m 11s):
A good number of companies, as I mentioned, would only reimburse for video appointments prior to COVID, and they relaxed those rules to allow for phone-only visits, but this is such a patchwork. It's not just about now state law, but it's about the insurance company and the policy that you have from that insurance company, to know what your coverage is. It's really complicated for us as consumers.

Terry Wilcox (20m 34s):
What about coverage under Medicare and Medicaid? Can you give our audiences sort of bird's eye view of what is differentiated there?

Monica Bryant (20m 43s):
Sure. Since COVID, we've seen a huge uptick in the usage of telehealth and that was true for Medicare beneficiaries as well. In fact, a study came out that one-in-four Medicare beneficiaries had a telehealth visit between Summer and Fall of 2020, which makes perfect sense. If someone has original Medicare, telehealth services are covered under Part B, which is medical insurance. The challenge there is, there is an annual deductible and a 20% co-insurance in Part B, and that's going to be the same for in-person and virtual visits.

Monica Bryant (21m 24s):
However, Medicare did carve-out some services, that when they receive them virtually, those co-payments get waived. There was actually an advantage, or a benefit, to receiving certain services via telehealth, which was really interesting. If someone has an Advantage Plan, then it's going to be more like what I was talking about with the individual, and employer insurance, where it really is going to be up to the individual plan to decide if it's going to cover telehealth.

Terry Wilcox (21m 49s):
What's the bottom line for folks out there?

Monica Bryant (21m 52s):
That you can't assume that you do, or don't, have coverage for telehealth, but you actually have to seek out that information from your insurance provider to figure-out how they will, or won't cover, the telehealth. I wish it was actually that simple, but I think that people need to be really specific in their questions. Not just to say, do you cover telehealth, because coverage might depend on the type of service. A better question might be, do you cover telehealth for urgent care needs, or mental health care services, or preventative services, or whatever it is that you think you might need.

Monica Bryant (22m 34s):
I think certainly to ask if that insurance company requires people to get a prior-authorization before accessing telehealth. Then there's all the questions around cost. Just because an insurance company covers telehealth, doesn't mean that it's going to be free for you to use it. You could still have deductibles to pay, co-payments to pay, and it still could get applied to your co-insurance or your out-of-pocket maximum. So understanding how the insurance company deals with the costs around telehealth, just like with in-person providers, you need to ask if the insurance company requires that you use a particular network for telehealth visits.

Monica Bryant (23m 15s):
We know that some insurance companies have said that they're only going to cover services provided through a specific app, or portal, or particular company that you might use for telehealth. I think it's really important to kind of drill-down and get the specifics, just like you would for an in-person service, to understand how the insurance company is going to cover, if at all, telehealth services.

Dr. Bob Goldberg (23m 48s):
On this podcast, we always like to give you a platform to share your healthcare stories, talk about a healthcare issue, or insurance problem that's impacted you. You can make your voice heard in our advocacy space here. You can become our next patient correspondent. All you have to do is send an email to Terry, and me, at That is

Terry Wilcox (24m 12s):
We're so glad you joined us for today's episode. Now please let us know what you think by leaving us a rating and a review. If you found a story interesting, pass the episode along to a friend. This helps us reach more members of the chronic disease community and allows us to keep reporting back to you on the latest health policy news and developments.

Dr. Bob Goldberg (24m 34s):
Make sure you're following the podcast on your favorite podcast app. You can also ask Alexa to play the Patient's Rising Podcast. I didn't know that, that's so cool!

Terry Wilcox (24m 44s):
You can! Join us here again next week for a special episode all about employer-based health insurance. Did you know it really is possible to have affordable insurance that covers what you need. We hear from employers who are doing just that. Until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy.