Duke Health Government Relations continues to engage lawmakers in the 117th Congress on key health care issues impacting Duke, including those listed below. Please email us if you would like to be engaged on these issues. For the most up to date information, please subscribe to our newsletter and follow us on Twitter.
FEDERAL RESPONSE TO COVID-19
On March 12, 2021, President Biden signed into law the latest round of COVID-19 relief and stimulus. The $1.9 trillion American Rescue Plan codifies many of the objectives outlined in the Biden administration's national COVID-19 strategic plan released shortly after the inauguration. Among other priorities, the American Rescue Plan:
Increases a state’s base FMAP by 5% for states that newly expand Medicaid services (which could include NC).
Expands Affordable Care Act subsidies for insurance purchased through federal and state exchanges by fully removing the current income cap for eligibility for two year
Caps the amount paid in premiums by any exchange purchaser to 8.5% of income.
Provides a 100% COBRA subsidy through September 30, 2021 for those who have lost their jobs to remain on their employer-sponsored healthcare plan.
Eliminates cost sharing for individuals utilizing Medicaid and the Children’s Health Insurance Program (CHIP) to receive the vaccine for up to one year of the end of the public health emergency (PHE).
Allows states for 5 years to extend Medicaid eligibility to postpartum women (up to 12 months after birth) and incarcerated individuals.
Provides a temporary, one year 7.35% Medicaid FMAP increase for states to make improvements to Medicaid supported home and community based services.
Provides an enhanced FMAP to incentivize state Medicaid programs to cover mobile crisis intervention services for people in mental health or substance abuse crises.
Eliminatwa the cap on Medicaid drug rebates beginning in 2023.
$7.5 billion to the CDC for vaccine distribution.
$5.2 billion to HHS for research and development, manufacturing, production, and purchase of vaccines, treatments, and supplies.
$46 billion for national testing and contact tracing strategies.
$7.5 billion for HHS to provide public health workforce grants to the states to aid in the hiring and training of healthcare staff.
$7.6 billion for community health centers.
$40 million in grants for health care providers to promote mental health among their health professional workforce.
Separate legislation is expected to be introduced soon to address further delaying schedule Medicare sequester cuts. The current moratorium is set to expire March 31.
On January 7, 2021, the Department of Health and Human Services (HHS) formally renewed the COVID-19 public health emergency (PHE) declaration for 90 days through April 2020, which includes the Centers for Medicare and Medicaid Services (CMS) waiver authority to continue flexibilities for telehealth services.
As Congress begins to examine FY 2022 spending priorities, and possible additional COVID relief, Duke Health Government Relations will continue to advocate for priorities that strengthen Duke’s response to COVID-19 and supports communities in Durham, and throughout North Carolina, strengthening funding for biomedical research, including for the NIH and Departments of Defense and Veterans Affairs medical research. In addition, we will continue to promote funding priorities specific to the School of Medicine and School of Nursing.
On December 21, 2020, Congress approved a combined spending package that included $1.4 trillion in discretionary spending to fund the federal government through September 30, 2021, and $900 billion in COVID relief and stimulus. The COVID-19 relief portion of the bill provided $1.25 billion to the National Institutes of Health (NIH) for research and clinical trials related to the long-term effects of COVID-19 ($1.15 billion), as well as continuing support for Rapid Acceleration of Diagnostics ($100 million for RADx). In addition, it provided $3 billion for the Provider Relief Fund and included important language on reporting requirements and how providers may calculate lost revenues. Among many other things, the bill also eliminated the $4 billion in Medicaid DSH cuts scheduled to occur in FY 2021 and created 1,000 new Medicare Graduate Medical Education slots for the first time in 25 years.
To address the federal, state, and local response to the COVID-19 virus, Congress has now approved six emergency spending packages totaling approximately $5.4 trillion. Funding has been allocated to mitigate the impact of COVID-19 on communities, healthcare providers, and individuals throughout the country. Among other provisions, the packages have included:
- Additional funding for the NIH, Centers for Disease Control and Prevention (CDC), Public Health and Social Services Emergency Fund, and Food and Drug Administration (FDA);
- Funding for state and local governments, with $8 billion set aside for local governments, in a coronavirus relief fund;
- Small business assistance funding;
- Additional funding for hospitals;
- Eliminating patient cost-sharing for COVID-19 testing and related services, establishing an emergency paid leave program, and expanding unemployment and nutrition assistance
To demonstrate the seriousness of the Biden administration’s pledge to reform the nation’s immigration system, the Biden team released a legislative proposal on inauguration day.
The United States Citizenship Act of 2021 seeks to provide more expedited pathways to citizenship for undocumented individuals living in the United States, implement stronger worker protections, recapture and repurpose unused visas, improve visa processing and immigration court backlogs, address migration, and responsibly secure borders.
Among the notable highlights of the proposal is the section dedicated to immigration and economic growth. It includes a commitment to prioritize employment-based visa backlogs, and reducing processing wait times, which in particular could be helpful in addressing healthcare professional shortages across the country during and after the current public health emergency. It would also seek to make it easier for international graduates of United States-based universities with advanced STEM degrees to remain in the country and provide additional protections for dependents of H-1B visa holders. Additional provisions to adjust the issuance of green cards based on macroeconomic conditions and review compensation for highly-skilled workers also have the potential to attract and retain international talent but will have to be crafted carefully as to avoid unintended consequences.
President Biden has also issued a series of immigration-related executive orders, including policy statements to reaffirm a commitment to DACA, reverse the Muslim-country travel ban, stand down aggressive immigration enforcement practices, and to review the public charge rule.
During the COVID-19 national health emergency, Duke Health Government Relations is closely monitoring immigration and visa-related issues impacting our health system's ability to maintain a strong and well-trained medical workforce. The NC Congressional delegation is aware of the challenges presented by current J-1 and H1-B visa regulations with respect to bolstering our frontline response to COVID-19, and efforts are underway to urge the United States Citizenship and Immigration Services (USCIS) Office to provide additional flexibilities.
Duke Health Government Relations is working with our Duke University government relations colleagues, professional associations, partners, and others to advocate on behalf of our international students and their contributions to the medical workforce and research enterprise. We will continue to communicate our concerns with the North Carolina congressional delegation and continue our advocacy with the 117th Congress and Biden Administration.
Prior Executive Orders
On April 22, 2020, President Trump signed an Executive Order initially suspending for 60 days immigration procedures for those outside of the United States seeking lawful permanent residence. Notably, health care professionals and medical researchers were exempt from the order. The order was later extended through December 31, 2020.
On May 29, President Trump issued a proclamation that would suspend visa processing for certain individuals from China who are seeking to enter the United States to pursue graduate studies or conduct research. The proclamation, limited in scope and justified through national security concerns, would suspend F and J visa processing from "any national of the People’s Republic of China who receives funding from or who is currently employed by, studies at, or conducts research at or on behalf of, an entity in China that implements or supports China’s military-civil fusion (MCF) strategy.”
These orders were extended through March 2021 by then-President Trump unless revoked by President Biden.
In October, the Department of Homeland Security (DHS) and the Department of Labor (DOL) issued interim final rules (IFR) to significantly change qualifying criteria and prevailing wage determinations for highly-skilled worker H-1B visa applicants. Implementation of the rules was blocked by the Federal District Court for the Northern District of California in December 2020.
In November 2020, a federal judge blocked any further implementation of controversial new rules affecting H-1B visa applications for highly-skilled workers. The ruling includes rolling back new prevailing wage determination requirements made effective October 8, 2020 that significantly raise minimum salary requirements for new and renewed H-1B highly skilled worker visa applicants. The rulings are a victory for the business community, universities, and academic medical centers, particularly in terms of their continued ability to retain and recruit specialized international professionals, researchers, and academics.
The Trump administration made another attempt to issue a DOL rule for H-1B highly skilled workers just before leaving office in mid-January. However, the Biden administration is working to formally revoke that final attempt.
FEDERAL APPROPRIATIONS AND THE BUDGET
Federal funds help promote Duke Health’s multiple missions of research, education, and patient care. The National Institutes of Health (NIH) and the Department of Defense Medical Research Program are two of the primary sources of federal funding for biomedical research at Duke.
On May 28, President Biden released his administration's first full budget request to Congress following a "skinny budget" outline issued on April 9. The $6 trillion FY 2022 budget request provide's the administration's recommendations for federal spending, revenues, programmatic priorities, and assumes the enactment of policies proposed in the Build Back Better comprehensive infrastructure plan.
Among the priorities relevant to Duke Health include:
- $131.7 billion for the Department of Health and Human Services (HHS) - $25 billion increase above FY 2021 enacted levels
- $51.9 billion for the National Institutes of Health (NIH) - $9 billion increase above FY 2021 enacted levels
- $6.5 billion of the increase would be to establish the Advanced Research Projects Agency for Health (ARPA-H)
- $100 million for Community Based Violence Intervention (including hospital-based programs) at HHS
- Combined with $100 million to support Community Based Violence Intervention at the Department of Justice
- Biden administration's infrastructure proposal includes $5 billion to ensure sustained overall funding for the Community Based Violence Intervention initiative for 5 years
- $200 million to reduce maternal morbidity and mortality and end race-based disparities in maternal mortality rates
- Would strengthen Maternal Mortality Review Committees; expand the Rural Maternity and Obstetrics Management Strategies program; help cities place early childhood development experts in pediatrician offices with a high percentage of Medicaid and Children’s Health Insurance Program patients; implement implicit bias training for healthcare providers; and create State pregnancy medical home programs
- $8.7 billion for Center for Disease Control and Prevention (CDC) ($1.6 billion above FY 2021 enacted levels)
- Includes $153 million for CDC’s Social Determinants of Health program to support States and Territories in improving health equity and data collection for racial and ethnic populations
- $51.9 billion for the National Institutes of Health (NIH) - $9 billion increase above FY 2021 enacted levels
- $715 billion for the Department of Defense (DoD) - flat base-level funding
- Includes prioritization of robust research initiatives within DoD
- Note: The President's budget does not propose a line item for Congressionally Directed Medical Research Programs (CDMRP) as those funding levels are determined solely at the discretion of congressional appropriators
- Includes prioritization of robust research initiatives within DoD
- $882 million for the Department of Veterans' Affairs (VA) Medical and Prosthetic Research Program
- Priorities include advancing VA’s understanding of traumatic brain injury, the effects of toxic exposure on long-term health outcomes, and the needs of disabled veterans.
- $68.7 billion for the Department of Housing and Urban Development ($9 billion increase above FY 2021 enacted levels)
- Includes increased support for community housing partnerships and collaborative efforts to end homelessness
- $27.8 billion for the Department of Agriculture - $3.8 billion increase above FY 2021 levels
- Includes increased funding support for rural broadband, clean drinking water, and food security and nutrition, and the food safety net
- Offers policy support for congressional efforts to lower drug prices by letting Medicare negotiate payment for certain high-cost drugs and requiring manufacturers to pay rebates when drug prices rise faster than inflation
- Endorses many of the provisions in House Democratic leaders signature drug pricing reform legislation, the Elijah E. Cummings Lower Drug Costs Now Act (H.R. 3)
While nonbinding, the President’s budget request is an indication of the administration’s spending and policy priorities for the coming fiscal year, including those for research and healthcare and how to invest in new and existing federal programs.
For additional details on key healthcare related funding priorities, HHS has issued its FY 2022 Budget in Brief summary.
The administration is expected to work closely with the Democratically-controlled Congress to advance as many spending and policy recommendations as possible.
Duke Health Government Relations is actively engaged in the budget and appropriations process and will continue to advocate for sustained and strengthened funding for Duke Health priorities.
The House Appropriations Committee began holding hearings with Biden administration officials the week of April 12, 2021 on the President's FY 2022 budget. The House Appropriations Committee's subcommittees began marking up FY 2022 spending bills the week of June 21, 2021, and aim to complete their work by the end of July 2021.
Congress has already kicked off its FY 2022 budget and appropriations process by soliciting funding requests from stakeholders. Our office has been working with the NC congressional delegation and key committee staff to ensure that federal biomedical research, healthcare workforce and infrastructure, graduate medical education, telehealth, and other key priorities important to Duke Health’s mission are properly resourced and supported.
FY 2022 marks the first time in almost a decade that federal discretionary spending will not be limited by statutory caps. However, calls for spending constraints may complicate plans to grow programs.
Current FY 2021 funding levels were established by the Consolidated Appropriations Act in December 2020. On December 21, 2020, Congress approved a combined spending package that included $1.4 trillion in discretionary spending to fund the federal government through September 30, 2021, and $900 billion in COVID relief and stimulus. Among its provisions, the omnibus spending package provided $42.9 billion for the NIH in FY 2021, which is an increase of $1.25 billion or 3 percent above the FY 2020 level. The final legislation also provided vital workforce funding at the Health Resources and Services Administration including a $15 million increase for Title VII Health Professions Programs and $4.5 million for Title VIII Nursing Workforce Development Programs. Funding for Congressionally Directed Medical Research Programs at the Department of Defense held steady at $1.2 billion and the Department of Veterans Affairs Medical and Prosthetic Research Program received a $15 million increase for a total of $815 million.
The President’s budget request is typically released on the first Monday in February, but often this timeline is pushed during a new administration’s first year. The President’s request is a reflection of an administration’s priorities and may serve as a guidepost for topline spending recommendations in Congress.
While the President must sign the twelve annual appropriations bills approved by Congress into law, Congress ultimately has the “power of the purse” to make final spending allocation decisions. The congressional budget process typically begins in the first quarter every year and may include a budget resolution to set targets for the appropriations committees in the House and Senate to begin making formal spending recommendations and drafting individual appropriations bills.
Engagement in the annual budget and appropriations process helps Duke Health Government Relations identify new opportunities for Duke Health priorities, or potential areas of concern that require strategic action.
Both the federal and state response to the COVID-19 national health emergency has led to an unprecedented expansion of telehealth services and access to telehealth resources. The Centers for Medicare and Medicaid Services (CMS), through emergency waiver authority, have provided numerous telehealth flexibilities that will remain in place through the end of the public health emergency (PHE).
On January 7, 2021, the Department of Health and Human Services (HHS) formally renewed the COVID-19 PHE declaration for 90 days through April 2021, which includes the CMS waiver authority to continue flexibilities for telehealth services.
Biden administration officials have indicated that the PHE is expected to remain in effect through at least the end of 2021.
The Temporary Reciprocity Ensure Access to Treatment (TREAT) Act (H.R. 708/S. 168) was officially reintroduced in the House and Senate in early February 2021. The legislation, slightly modified from the version introduced last Congress, would temporarily allow, subject to scope of practice and other requirements, a health care professional to provide in-person and telehealth services in any U.S. jurisdiction based on that individual's authorization to practice in any one state or territory during the COVID-19 PHE - and for a 180 day normalization period after the end of the PHE.
Duke Health and Duke University endorsed the bill along with over 200 other health systems, academic medical centers, and other stakeholders.
With the COVID-19 pandemic extending into 2021, existing telehealth policies will continue to be examined in the current session of Congress, including efforts to make many of the current flexibilities permanent. Our office is closely monitoring the introduction of telehealth legislation and new telehealth-related priorities in the 117th Congress.
Duke Health Government Relations is working in partnership with Duke leadership and the Duke Telehealth Office to ensure that beneficial telehealth policies are strengthened and maintained.
The federal government, through HHS andCMS, and NC Governor Roy Cooper have issued a number of temporary waivers and orders, which have relaxed requirements for the use of telehealth under Medicare and Medicaid to assist providers on the frontlines of the emergency and allow for the continuation of care for millions of patients (including more than 80 additional telehealth services for Medicare patients). Duke Health Government Relations has been working with the NC Congressional delegation to keep them updated of the impacts of telehealth policy on Duke Health providers and through them to ensure that HHS continues to open access to the most needed telehealth services.
At the state level, NC Governor Cooper issued an Executive Order that, among other provisions, provides for a temporary waiver of North Carolina licensure requirements for health care and behavioral health personnel licensed in another jurisdiction.
- The American Hospital Association has developed a resource document highlighting which of the telehealth flexibilities may be indefinitely extended by CMS and which will require a congressional response to be made permanent.
- The American Telemedicine Association, which is among the professional organizations and partners the Duke Health Government Relations team consults on telehealth issues, has outlined which of the expanded telehealth options it would like to see be made permanent beyond the public health emergency.
MEDICARE SUPPORT FOR GRADUATE MEDICAL EDUCATION (GME)
The Resident Physician Shortage Reduction Act of 2021 (S. 834/H.R. 2256) was recently introduced in the Senate by Senators Robert Menendez (D-NJ) and John Boozman (R-AR) and Senate Majority Leader Charles Schumer (D-NY) and in the House by Reps. Terri Sewell (D-AL), John Katko (R-NY), Tom Suozzi (D-NY), and Rodney Davis (R-IL). The legislation would provide 14,000 new Medicare graduate medical education (GME) slots over 7 years. In determining which hospitals would receive slots, CMS would be required to consider the likelihood of a teaching hospital filling positions and would be required to distribute at least 10% of the slots to each of the following categories of hospitals:
Hospitals in rural areas;
Hospitals training over their current GME caps;
Hospitals in states with new medical schools or new branch campuses; and
Hospitals that serve areas designated as health professional shortage areas (HPSAs).
The legislative language closely reflects the language enacted in the Consolidated Appropriations Act, 2021, which authorized 1,000 new Medicare-supported GME slots.
On April 27, 2021, Senators Maggie Hassan (R-NH) and Susan Collins (R-ME) introduced the Opioid Workforce Act of 2021. This bipartisan legislation would make available 1,000 new Medicare-supported residency positions to hospitals that have, or are in the process of establishing, approved residency programs in addiction medicine, addiction psychiatry, or pain medicine. Specifically, the bill would:
Increase by 1,000 the number of Medicare supported residency positions available to teaching hospitals that have or are in the process of establishing approved residency programs in addiction medicine, addiction psychiatry, or pain medicine.
500 slots are set aside for hospitals with established programs in addiction medicine, addiction psychiatry, or pain medicine.
500 slots are set aside for hospitals that are in the process of establishing a program in addiction medicine, addiction psychiatry, or pain medicine.
Hospitals may also receive slots for the associated number of residents training in a pre-requisite program, such as internal medicine, necessary for the number of full-time residents that will ultimately train in the addiction medicine, addiction psychiatry, and/or pain medicine program.
A hospital may apply for slots under both the new and existing categories (i.e., a hospital with an established pain medicine program that is also in the process of establishing an addiction psychiatry program may apply for slots under both the ‘new’ and ‘existing’ buckets)
A hospital is capped at 25 slots.
Duke Health Government Relations continues to support lifting the cap on Medicare GME to help address the shortage and protecting vital GME and IME payments to teaching hospitals. We look forward to supporting bipartisan efforts and legislation in the 117th Congress to continue to increase the Medicare GME residency slots.
For the first time in over two decades, Congress created 1,000 new Medicare Graduate Medical Education slots as part of the COVID-relief that passed Congress in December 2020. This is a vital first step in addressing the physician shortage, which continues to rise as the population ages and grows every day. Medicare currently has a 23-year old cap on support for training new physicians, which does not reflect the needs in addressing the shortage. In addition, teaching hospitals incur additional costs in training future physicians in treating complex patients on the cutting edge of new treatments and care (through indirect medical education, or IME).
The December 2020 legislation also provided greater flexibility for rural training and addressed concerns by hospitals that accidently triggered an artificially low GME cap.
MEDICAID AND MEDICAID DSH PAYMENTS
On December 21, 2020, as part of the COVID-19 relief bill, Congress eliminated the $4 billion in Medicaid DSH cuts scheduled to occur in FY 2021 through 2024; however, the bill added two additional years of a potential $8 billion in cuts in FY 2026 and 2027.
Medicaid is the largest health insurance program in the United States, and hospitals provide care for a large number of these patients, despite low reimbursement rates. Medicaid DSH payments help to alleviate the burden for caring for the large number of Medicaid and uninsured patients.
President Biden has signaled his commitment to strengthening Medicaid and ensuring access to care, including signing a January 28, 2021, Executive Order that will, among other provisions, re-examine policies that create challenges for individuals in the Medicaid program. This includes examining policies that undermine protections for individuals with pre-existing conditions and waivers that may result in reducing coverage or create barriers to coverage.
Duke Health Government Relations will continue to prioritize protecting coverage for Medicaid beneficiaries; ask policymakers to maintain the commitment to spending on medically necessary care; and urge Congress to avoid taking action that would result in less care, reduce payments for safety net providers, or undermine the ability of providers to treat Medicaid and uninsured patients. We will engage on these efforts to strengthen the Medicaid program and provide real-time insights into new opportunities to the Duke Health community.
After two years of bipartisan negotiation, Congress passed a broad COVID-19 relief and FY 2021 omnibus spending package in December 2020 that included language to address surprise medical billing. The provision established a baseball-style arbitration process to settle out of network billing disputes between providers and payers.
Duke Health supports resolving surprise medical bills for patients and supports an independent dispute resolution (IDR) process, such as arbitration, to settle billing issues between providers and payers.
Attention now turns to the rulemaking process, particularly the design of the formal arbitration process to resolve billing disputes. Rulemaking is expected to take much of 2021 to complete.
Our office will be monitoring agency activity closely as regulations for the new surprise billing provisions are promulgated.
On April 25, House Ways and Means Committee Chair Richard Neal (D-MA), House Energy and Commerce Committee Chair Frank Pallone (D-NJ), and House Education and Labor Chair Bobby Scott (D-VA) reintroduced the Elijah E. Cummings Lower Drug Costs Now Act (H.R. 3).
Among other provisions, the legislation would seek to lower prescription drug costs by:
Authorizing the HHS Secretary to negotiate better prescription drug prices in Medicare and make those negotiated prices available to commercial health insurance plans;
Capping Medicare beneficiaries’ out-of-pocket spending on prescription drugs at $2,000 per year;
Requiring drug manufacturers to pay back rebates to the federal government if they increase prices faster than inflation; and
Reinvesting federal cost-savings in the NIH and the Food and Drug Administration to support research and development of new breakthrough treatments and cures, as well as making investments in combatting the opioid crisis.
Estimates from the Congressional Budget Office in 2019 suggest the legislation could result in federal savings of approximately $456 billion over 10 years, as well as $42 billion in savings for the Medicare program due to anticipated better health outcomes for Medicare beneficiaries with increased access to drugs at lower prices.
The legislation passed the House in the 116th Congress but was not taken up by the Republican-controlled Senate. Even if passed by the House again, the bill would face an uphill fight under regular order in the Senate with such a narrow Democratic majority. Key provisions in the legislation may ultimately be included in the Biden administration’s healthcare infrastructure plans.
Duke Health Government Relations supports thoughtful policy to increase access to affordable pharmaceuticals, including through the 340B drug pricing program. Efforts should not hamper or prevent innovation that leads to new treatments and therapeutics, or change the scope or access to the 340B Drug Pricing Program. Duke Health looks forward to working with the Administration and policy makers on this important effort.
Access to affordable pharmaceuticals is important to manage health and enable improved health outcomes. Despite almost a two year-negotiation, the 116th Congress did not reach an agreement on legislation focused at lowering the cost of prescription drugs. President Biden has expressed his commitment to lowering prescription drug prices, including through possible proposals that would allow for reimportation and for the Medicare program to negotiate drug prices.
A carryover effort from the previous Administration was the Most Favored Nation (MFN) Model, being implemented through CMS. On December 23, 2020, the U.S. District Court for the District of Maryland issued a temporary restraining order in Association of Community Cancer Centers v. Azar, No. 1:20-cv-03531, which temporarily restrains HHS from implementing, enforcing, or otherwise effecting the Most Favored Nation Rule for a period of fourteen days. On January 6, 2021, the Court extended the temporary restraining order through January 20, 2021. CMS has indicated that MFN Model was not implemented on January 1, 2021 and will not be implemented without further rulemaking.
WORKING IN PARTNERSHIP TO ADDRESS THE BLACK MATERNAL HEALTH CRISIS
According to the CDC, each year in the United States, about 700 women die during pregnancy or in the year after. Black women are three to four times more likely to die from pregnancy-related complications and twice as likely to lose an infant to premature death. The Duke Department of Obstetrics & Gynecology and the Duke Health are dedicated to providing excellent care to all of the communities we serve and committed to addressing maternal health disparities.
Duke Health supports efforts by Congress to improve maternal health and health outcomes. Specifically Duke Health support efforts by U.S. Reps. Alma Adams (D-NC) and Lauren Underwood (D-IL), and the Black Maternal Health Caucus, to address the Black maternal health crises through the “Black Maternal Health Momnibus Act,” which has been reintroduced in the 117th Congress. This bill would provide the necessary tools, resources, and policies to support mothers and improve health and health outcomes. Duke Health also supports efforts to advance policies to promote the inclusion of pregnant and lactating individuals in vaccine and therapeutic development.
For more information, click here.
SICKLE CELL DISEASE
Sickle Cell Disease (SCD) is a devastating and painful disease impacting individuals and families in communities across the United States. According to the Centers for Disease Control and Prevention (CDC), it is estimated that SCD affects about 100,000 Americans, with a disproportionate impact on racial and ethnic minorities. SCD is not only painful, but those who suffer from it are more susceptible to other infections and complications which result in a severely shortened lifespan, frequently in the mid 40’s vs. 70-80’s compared with the US population.
In FY 2021, Congress supported a separate budget line for the SCD surveillance program within the National Center for Birth Defects and Developmental Disabilities’ Blood Disorder Division at the CDC. For FY 2022, Duke Health has requested $14.3 million in federal appropriations for the SCD Data Collection Program at the CDC through this separate budget line.
Funding would be used to support current grantees in nine states, which includes the NC Sickle Cell Data Collection Program, a close partnership between Duke University and the NC Department of Health and Human Services. Funding would also be used to expand surveillance to a total of 25 states.
Managing SCD is a life-long struggle. Researchers at the Duke University School of Nursing (DUSON) and the Duke University School of Medicine (DUSOM) are working diligently to improve the quality of life, quality of health services provided, and clinical outcomes for both adults and children with SCD in North Carolina and throughout the United States.
DUSOM’s Sickle Cell Center provides medical services, comprehensive care, and acute management for over 850 children and adults in the Sickle Cell Day Hospital, in addition to basic and clinical research, screening and testing, social services, educational services, and community outreach. Clinics are located in Durham, Raleigh, and Fayetteville, and telehealth visits are available to patients throughout the state. DUSON conducts research to help understand the prevalence and impact of SCD and on how to better treat and care for patients.
Federal funding is critical to Duke’s important SCD work. Funding for this research is supported by the CDC, Health Resources and Services Administration (HRSA), the National Institutes of Health (NIH), and the Agency for Healthcare Research and Quality (AHRQ).