Skip to main content
Blog Post

Read on Washington: February 2024 Advocacy Update from Lisa Simpson

This month's "Read on Washington," available only to AcademyHealth members, includes updates on appropriations, new CMS guidance on data access, congressional working groups on MACRA, and more.

Appropriations remain uncertain as government shutdowns loom

Almost five months into FY24, Congress continues to struggle to find agreement on how to pass the FY24 funding bills. Congress must enact either full appropriations legislation or a fourth continuing resolution by March 1 to avoid a partial government shutdown. Government funding for FY24 is currently staggered with one tranche of bills expiring on March 1 and the remainder on March 8. Negotiations over FY24 have been long mired in debates over total funding levels, how to split the total across all 12 appropriations bills, policy riders, and debates over a supplemental funding bill for Ukraine. The House and Senate initially marked up their FY24 bills in June and July last year, but have been unable to bridge the significant differences between the chambers. 

While Congress is still trying to close out FY24, FY25 negotiations are set to begin next month. The President’s Budget Request is expected to be released on March 11, which will be the unofficial starting gun for FY25. The Friends of AHRQ released a letter from a record breaking 171 organizations calling for the Agency to be fully funded in FY25. 

CMS announcement on Research Data Request & Access Policy Changes

The Centers for Medicare and Medicaid Services (CMS) abruptly announced two major changes to their research data request and access policies. First, they are requiring all researchers requesting data to access the data within the secure CMS research environment, instead of also being able to access physical copies of the data. This change leads to significantly higher per user fees for researchers and significantly reduces the types of data analysis currently being undertaken. They are requiring that all current data analysis being undertaken outside of the VRDC be closed by August 29 of this year. Second, they are increasing fees for access to the data. You can read AcademyHealth’s response HERE, where we outline the harms this proposal will have and suggested ways for CMS to support both researchers and concerns around data security. 

HELP Committee Republicans release proposals for health data privacy

Senator Bill Cassidy (R-LA), ranking member of the Senate Health, Education, Labor, and Pensions (HELP) Committee, released a report outlining ways to improve privacy protections for Americans’ health data. This comes after Cassidy requested information from stakeholders last year on how to enhance health data privacy protections covered by the Health Insurance Portability and Accountability Act (HIPAA) framework, in addition to considering privacy protections for new sources of health data. In the report, Cassidy outlines several proposals to modernize the HIPAA framework, safeguard health data not covered by HIPAA, and how to consider data that cannot be clearly defined as health or non-health.

CDC seeks to “re-introduce” itself to the public

The Centers for Disease Control and Prevention will spend this year “re-introducing” itself to the public as well as focusing on mental health, crisis preparedness and preventive care, according to its director. Mandy Cohen laid out the CDC’s priorities for 2024 at a meeting with the agency’s advisory committee. The panel of experts is partly tasked with helping rebuild public trust in the agency following criticism about its decision-making during the pandemic — an effort that began under previous CDC Director Rochelle Walensky.

New bipartisan Senate working group announced to investigate MACRA proposals

Senators Catherine Cortez Masto (D-Nev.), Marsha Blackburn (R-Tenn.), John Thune (R-S.D.), John Barrasso (R-Wyo.), Debbie Stabenow (D-Mich.), and Mark Warner (D-Va.) announced the formation of a Medicare payment reform working group. The primary goal of this group is to investigate and propose long-term reforms to the physician fee schedule (PFS) and make necessary updates to the Medicare Access and CHIP Reauthorization Act (MACRA).

Bill introduced to direct NIH to study generative AI to improve health outcomes

Congressman Ted W. Lieu (D-CA) introduced the Healthcare Enhancement and Learning Through Harnessing Artificial Intelligence (HEALTH AI) Act, which would award grants to explore how generative AI can improve patient care. The HEALTH AI Act would direct the National Institutes of Health (NIH) to award grants to universities, nonprofits, and government agencies to better understand how generative AI can be used to improve outcomes in the health care sector. The NIH would be required to prioritize projects that encourage the adoption of generative AI, invest in the health care workforce, or reduce disparities in health care outcomes.

FDA warns about smartwatches measuring blood glucose levels

The Food and Drug Administration is warning consumers, patients, caregivers, and health care providers of risks related to using smartwatches or smart rings that claim to measure blood glucose levels (blood sugar) without piercing the skin. These devices are different than smartwatch applications that display data from FDA-authorized blood glucose measuring devices that pierce the skin, like continuous glucose monitoring devices (CGMs). For people with diabetes, inaccurate blood glucose measurements can lead to errors in diabetes management, including taking the wrong dose of insulin, sulfonylureas, or other medications that can rapidly lower blood glucose. Taking too much of these medications can quickly lead to dangerously low glucose, leading to mental confusion, coma, or death within hours of the error.

Commonwealth Fund research finds that MA plans more likely to have delays in care

The Commonwealth Fund released findings from its 2024 Value of Medicare Survey to compare the experiences of beneficiaries with traditional Medicare to those with Medicare Advantage. Most analyses have found that the federal government has always paid MA plans more than what it would cost to cover similar people in traditional Medicare. Although estimates vary, one study finds that plans were overpaid by more than $27 billion in 2023. Larger shares of beneficiaries in MA plans than in traditional Medicare reported they experienced delays in getting care because of the need to obtain prior approval (22 percent vs. 13 percent) and couldn’t afford care because of copayments or deductibles (12 percent vs. 7 percent).

Disputes over surprise billing continue to soar

The No Surprises Act, passed in 2021, is viewed as the most comprehensive consumer health legislation since the Affordable Care Act. But implementation of the law, which is meant to hold patients blameless for unexpected out-of-network medical bills, has been less than perfect. The federal government received 13 times more surprise billing disputes in the first half of 2023 than it expected to receive in a full year, according to new CMS data. Of the 288,810 disputes filed in the first six months of 2023, fewer than half were closed, and arbiters rendered payment decisions in under a third of cases. Of those, providers won 77 percent of payment determinations, while health plans prevailed in 23 percent — noteworthy statistics given providers have argued the arbitration process is unfairly weighted toward insurers.

What I’m reading

Journals serve as important gatekeepers of evidence and the leadership of journals is relevant to their impact and success and the extent to which they are able to bring the best and most diverse evidence to readers. Recently, JAMA editor, Kirsten Bibbins-Domingo and colleagues affirmed their commitment “to ensure that editorial decision-makers and board members that advise the editors represent the breadth of thought, expertise, experiences, and backgrounds important for the fields of medical science covered by our journals. 

The Washington Post has a great article about how more dermatologists are offering skin-care services for people of color. There are currently 16 clinics nationwide that specialize in care for patients of color, which was sparked by a history of racial and ethnic disparities that affected patients. “For patients looking for clinicians with additional expertise in treating dermatologic conditions in those with pigmented skin as well as increased cultural competence, the environment of skin-of-color” centers and programs “can foster greater comfort for patients as well as greater trust in their clinicians,” said Nada Elbuluk, associate professor of clinical dermatology at the Keck school and director of its Skin of Color and Pigmentary Disorders Program. “This helps build rapport, and we know that when patients trust their clinicians and have rapport with them, this can lead to improved compliance and outcomes.”

Long COVID, which is a constellation of post-acute and long-term adverse health effects caused by the infection, is one of the most perplexing health challenges coming from the pandemic. Al-Aly and Topol write in Science about how the puzzle of this disease is an opportunity for the medical research community to better understand how acute infections cause chronic disease. They note that nearly all surveillance data systems are built on the archaic, and now obsolete, notion that accounting for cases, hospitalization, and death in the acute phase is sufficient to capture the health burden of the infection. This approach does not account for the burden of long-term health loss due to infectious illnesses, which obscures their true toll.

Rosenthal in The Atlantic wrote about the dismaying degree to which GoFundMe has become almost a health care utility. One study found that, in 2020, the number of U.S. campaigns related to medical causes—about 200,000—was 25 times higher than the number of such campaigns on the site in 2011. The use of GoFundMe has become normalized in the health care system, so much so that in some cases, patient advocates and hospital financial aid officers recommend crowdfunding as an alternative to being sent to collections. Potentially a third of all funds raised on the site are for medical care. 

What role does artificial intelligence have in the field of implementation science, which seeks to address the often significant time delay between establishing an evidence-based practice and its widespread use? Trinkely et al wrote in Implementation Science that AI applications offer opportunities to help address some of these issues and expand the methods that the field have access to. However, the technical nature of AI and the risks of biases and misuse suggests that researchers should cross-train in both fields to ensure that AI is used in an optimal and ethical way. 

Blog comments are restricted to AcademyHealth members only. To add comments, please sign-in.