August 2023 Advocacy Recap

Alec Bose:

Hello, and welcome to the CAP Advocacy Recap, a monthly podcast dedicated to catching you up on the top news for pathologists. I'm Alec Bose here with your August 2023 Recap. This month, we'll examine advocacy to prioritize Medicare payment reform in Congress, efforts to strengthen enforcements of payment decisions under the No Surprises Act, the critical research done by the CAP to study the pandemic era laboratory supply shortages and more.

We begin the day by bringing attention to an important health issue. September is Sickle Cell Disease Awareness Month, and as a member of the Sickle Cell Disease Coalition, the CAP has worked with several others to amplify the voice of the community and improve health outcomes by those impacted by the disorder. In addition, the coalition shares information, coordinates advocacy efforts and creates resources to spread awareness of sickle cell disease. We sat down with Dr. Glenn Ramsey of Northwestern Medicine to go more in depth on this topic, including the importance of the CAP's role in the coalition, what's being done currently to improve health outcomes for patients with sickle cell disease, and how other pathologists can join the effort.

So Dr. Ramsey, thank you so much for joining us today. We really appreciate you being here with us.

Dr. Glenn Ramsey:

Oh, thank you for having me. Glad to help.

Alec Bose:

So my first question is, why is it important for pathologists to participate in the care of sickle cell disease patients? And how can pathologists define a role in the program for that sickle cell disease testing?

Dr. Glenn Ramsey:

Yeah, pathologists, like other diseases, we participate in the care, and the diagnosis, and the monitoring, and the treatment, of these patients who need a lot of medical support for their illness. We're involved at all stages from diagnosing the baby with sickle cell disease or sickle cell trait, to measuring their blood levels. And we're involved with transfusions as we'll talk about, and we're also involved with various tests that are done for monitoring the disease and for the treatment of the many complications that these patients run into. So as pathologists, we have a lot of different aspects of the care of these patients that we're involved with. I think anytime, in general, CAP is always advocating for improved patient care for all of our members of our population in our healthcare systems. And so if there's an opportunity to be involved and help with advocating for the care of these patients, it's a very important opportunity and we are very interested in supporting these patients.

Alec Bose:

I am glad we're able to highlight how important this is and how pathologists can benefit from understanding their role in the testing process. My next question is, why is it important that the College of American Pathologists continue participating in the Sickle Cell Disease Coalition and spreading awareness of that disease?

Dr. Glenn Ramsey:

Yeah, the Sickle Cell Disease Coalition is a coalition of dozens of organizations, healthcare organizations and interested parties that are involved in advocating, and increasing awareness, and providing education for sickle cell patients, and caregivers, and another interested individuals in the public. And so the CAP would be one of the main organizations that would be able to address the laboratory testing and the transfusion needs of these patients. So although there's a really long list of great organizations that are involved in the coalition, the CAP has a very important role among all of them for these purposes,

Alec Bose:

Yeah, and I think it can be just important to recognize how big and diverse that coalition is, and how we play an important role in that, and how we can be a part of that. The next question that I was going to ask was, what does sickle cell disease have to do with the health equity that we are looking to improve here at the CAP? How can we ensure patients have access to testing, and do we need to establish or broaden any of these testing programs?

Dr. Glenn Ramsey:

Yeah, of course the sickle cell disease is primarily in persons of African-American, black, ancestry and often among some of the disadvantaged populations in our healthcare system. And so it's important, from that regard as well, to be aware of this within the support of these patients. Many times there may be economic or social barriers to treatment and to diagnosis, and so the CAP is, as I said, is always advocating for widening patient care and helping all of our different populations we serve. And this is a particularly important area for these patients because, some cases, they may have difficulty accessing the healthcare system, or... It's a very complicated disease and the sickle cell patients need a lot of expert care and expert laboratory testing. And so it's an area that really needs attention and when there's opportunities for us to help with that, we certainly should take advantage of that.

Alec Bose:

Much agreed. Much agreed. Just sort of following that, what should pathologists know about sickle cell disease from a patient perspective, and what can pathologists do to ensure that patients are more informed in getting the right care?

Dr. Glenn Ramsey:

Yeah, we've been involved in, through the transfusion support of these patients, in attending some of the forums that patients have been involved with in helping explain to medical professionals and to the publics what's involved in this. For example, there was a forum here in Chicago area a little while back, involving a sickle cell patient who was explaining their disease to blood donors who were interested in helping support these patients. And so it was very, very interesting to see what the impact of this was on donors who, the general public certainly has a little bit of a knowledge about this, but not really in detail. So it was very helpful, in that setting, to see how the explanation of the care from a patient and the impact of this disease was so serious, and how they really need transfusion support. And so it is very often a debilitating disease, obviously a chronic disease that the patients need to always be participating in healthcare. And so it's definitely an area that we can help in a number of different ways, and be aware of this in our testing, and in transfusion support for these patients.

Alec Bose:

Yeah, absolutely, and I think there's something to be said for patients being better informed can improve these health outcomes. And so that's, I think, critical to address and just make sure patients are more knowledgeable about the diseases-

Dr. Glenn Ramsey:

Exactly.

Alec Bose:

... that impact them in their communities. Yes, absolutely. The last question I have, can you tell us a bit about the sickle cell disease's implications to blood banks and the blood supply that healthcare providers rely on for donations?

Dr. Glenn Ramsey:

Yeah, this is an area that I'm most directly involved with in the blood bank, and there's a number of different things about that. One is, of course, many times they need transfusions for their complications, or for medical, or surgical problems that they're having. Sometimes they need long-term, lifelong, regular transfusions to prevent complications that they may have had in the past, or that they're threatened with. And so there's a lot of support that's needed from a transfusion standpoint, both in the donor collection area and also at the hospital laboratories area. They also need special blood, in the sense that the blood they get needs to have some extra testing to make sure it's hemoglobin S negative to provide the best support. And also it's recommended now, that these patients get red cell units that have extended antigen matching, that they're matched for several more antigens that we normally would for other patients, which makes it more complicated to find blood for each patient when they have to be matched.

And then, because of the frequent transfusions they get, as many people know, they develop sometimes complicated antibody problems that require them to get extra compatible units requiring extra testing, extra searching through the blood supply, looking for units that will match to that patient. And then, some pathologists are involved in red cell exchange treatments where their patients are getting multiple red cells at the same time, on a regular basis to prevent complications. And they may be treating the patients in person, at the bedside while they're getting their red cell exchanges, to remove the red cells and provide them with a large batch of normal red cells, at least for a few weeks. And then there are patients who are, these days with the increasing research and development of new treatments, there's opportunities for patients to undergo stem cell transplants to cure their sickle cell disease, or even gene therapy to cure their sickle cell disease through removing their bone marrow cells, altering the genetics of the cells, and then giving the cells back to them to increase their production of normal hemoglobin, to the point where they don't have the complications.

So all of these areas, pathologists are involved in every step, in terms of the blood collection, the transfusion support, the crossmatching, the extra treatment some people have, and even the stem cell transplants that some people, and the gene therapy now that it's emerging to help with these patients. So it's definitely an area to keep up on, to keep an eye on if you're at all involved in the laboratories that are involved in diagnosing these patients or doing the testing. Or if you're directly involved in the transfusion support of these patients, this is very, very important and an emerging area.

So a lot of interesting aspects from a pathologist standpoint to be involved with, and as I said, it's a very debilitating, chronic disease. When we see these patients in our laboratory or perhaps in the transfusion clinic, it really brings home the point that these are very complicated patients and their laboratory support is really crucial to their care.

Alec Bose:

Thank you, Dr. Ramsey. That answer was very enlightening, and this has been a very educational conversation that we've been having. Did you have any final thoughts on the topic?

Dr. Glenn Ramsey:

Well, it's definitely an interesting area, and this is an area that we hope to help with in terms of bringing awareness, bringing awareness to the need for blood transfusion in general. Another area we didn't touch on is the need for more minority donors to donate blood that can be better matched for these patients. Sickle cell patients, generally, black patients, have somewhat different blood type, [inaudible] different blood types in terms of some of the minor blood groups compared to other patients.

And so it's often helpful to find blood from black donors because they'll be extra compatible for these patients. So that's another challenge we didn't touch on, is the need to expand the donor population to get black donors in the public interested in donating blood, in general for the blood supply, but in particular for these patients, because many times patients with difficult crossmatch problems, they'll be looking for blood from other black donors with similar blood types in the Rh M and S and other blood groups.

Alec Bose:

I think that's a great suggestion and I think that's something that the CAP could benefit in advocating for. Thank you so much, Dr. Ramsey. We really appreciate your time and being with us today.

Dr. Glenn Ramsey:

Oh, sure. Thanks very much for having me.

Alec Bose:

We continue our recap with advocacy diligence in Congress. The CAP utilize its grassroots advocacy network to encourage members to reach out to their representatives, urging them to sign a letter calling for the prioritization of Medicare payment reform. As a result, more than 90 members of Congress signed and sent the bipartisan letter to house leadership, calling for reforms in the Medicare Access and CHIP Reauthorization Act, or MACRA, so that providers can receive the appropriate pay for better health outcomes. The letter also reflects a request for information sent last year, soliciting feedback from stakeholders to update the physician Medicare payment program. The original goal of MACRA was to shift the Medicare payment system to one that pays providers based on quality, value and the results of care delivered, rather than the number of services provided. However, it has been plagued with issues since its passage in 2015. Grassroots advocacy is at the core of driving change at the federal and state level, on healthcare policies that will impact pathologists' ability to practice and protect the patients they serve. Learn more about the CAP'S grassroots advocacy network on the Path Net page on our website cap.org.

We continue our recap with updates on the No Surprises Act. Some insurers are delaying payment or refusing to honor decisions rendered after pathologists win a decision following the Federal independent dispute resolution process. As such, the CAP is proactively working to strengthen the enforcements of payment decisions under the No Surprises Act. Earlier this year, the CAP sent a letter to the CMS calling for stronger enforcement of dispute resolution requirements, including implementing financial penalties in the case of nonpayment, and to improve the process of submitting a formal complaint against the private insurer. The No Surprises Act requires insurers and providers to undergo an independent arbitration process, to settle their differences without involving patients. A story featured in Axios titled, Doctors say insurers are ignoring orders to pay surprise billing disputes, highlights instances of insurance nonpayment that continues to affect physicians in all specialties. A survey of more than 48,000 physicians found several issues with this process, including the fact that only 24% of IDR submissions are completed, with over two thirds still pending. 52% of all arbitration determined payment amounts were not paid at all, and on average, it takes about eight months for a payment dispute to be resolved and paid. Many payers are not even participating in the mandatory open negotiations. The CAP continues to work with the CMS to address problems members and others are experiencing.

We turn now to lessons learned from the COVID-19 pandemic. Research by the CAP was recently featured in a CDC paper, highlighting laboratory supply shortages during the pandemic. A new paper titled, Pandemic Demand for SARS-CoV-2 Testing Led to Critical Supply and Workforce Shortages in U.S. Clinical and Public Health Laboratories, published the Journal of Clinical and Microbiology. The survey utilized data from the CAP to highlight the importance of laboratory supply chains and personnel to meet testing demand during the COVID-19 pandemic. Before the CDC paper was published, the CAP issued a press release detailing the findings and how the college is working to address the supply chain shortages, by supporting the PREVENT Pandemics Act of 2022 and tracking related provisions in the reauthorization of the Pandemic and All-Hazards Preparedness Act, that is currently being debated in Congress. We will continue to engage our nation's top health agencies so they can enact policy that prevents laboratory shortages and ensures pathologists are ready for future health emergencies.

That's all for this month's Advocacy Recap. Thank you so much for listening. For more on the stories we covered today, be sure to subscribe to our weekly advocacy newsletter and follow us on Twitter @CAPDCAdvocacy. Once again, for advocacy communications, I am Alec Bose, and we'll see you next month.

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