Health and Human Services (HHS)

SUPPORTING THOSE WITH CHRONIC KIDNEY DISEASE/AMKD

WHEREAS, more than 1 in 7 (15% of US adults or 37 million people) are estimated to have CKD and as many as 9 in 10 adults with CKD do not know they have CKD;

WHEREAS, kidney disease disproportionately affects communities of color;

WHEREAS, African Americans are almost four times more likely, and Hispanics are 1.3 times more likely to have kidney failure compared to White Americans;

WHEREAS, although they make up only 13.6% of the population, African Americans make up more than 35% of dialysis patients;

WHEREAS, 90% of patients with CKD stages 1-3 are undiagnosed and less than 3% of Black patients believe that they are at high risk for CKD;

WHEREAS, CKD, when diagnosed, is often diagnosed in late stages of the disease, when irreversible damage to the kidneys has already occurred;

WHEREAS, 15% of people diagnosed with CKD are unaware of the cause of their disease;

WHEREAS, recent scientific advancements have shown that some of the health disparities in CKD have a genetic basis;

WHEREAS, this genetic risk factor for CKD was discovered in 2010 when scientists learned that people who inherit two variants of the APOL1 gene are at significantly increased risk of developing kidney disease;

WHEREAS, these APOL1 risk variants are found exclusively in people of sub-Saharan African ancestry, including people who identify themselves as African American, Afro-Caribbean, and Hispanic, as the risk variants originally offered protection from a parasitic disease known as African human trypanosomiasis;

WHEREAS, 13% of people of African descent carry two APOL1 risk variants, and estimates suggest that up to 1 in 5 people with two APOL1 risk variants will develop kidney disease;

WHEREAS, APOL1-mediated kidney disease causes high levels of protein in the urine, or proteinuria, and can lead to various symptoms, including swelling in the legs and/or feet, fatigue, and weight gain;

WHEREAS, research has also shown that the course of kidney disease is more rapidly progressive in individuals with two APOL1 risk variants than in patients without them;

WHEREAS, the disease may eventually lead to kidney failure, requiring dialysis or a kidney transplant;

WHEREAS, there are simple tests to diagnose chronic kidney disease, including blood and urine tests, and a genetic test exists to identify presence of APOL1 risk variants; and

WHEREAS, it is imperative to improve diagnosis and treatment of CKD in African Americans through community-based programs that address racial disparities in the awareness, diagnosis, and treatment of chronic kidney disease.

THEREFORE, BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL) urges state and federal policymakers to ensure that high risk individuals are screened for chronic kidney disease, and that genetic testing is offered to individuals diagnosed with CKD as recommended by the best scientifically validated data;

BE IT FURTHER RESOLVED, that state Departments of Health should develop and fund chronic kidney disease screening programs that provide for referrals for follow up care, including genetic testing if appropriate;

BE IT FURTHER RESOLVED, that in developing chronic kidney disease screening programs, the state Department of Health and/or the appropriate state agency shall solicit and consider input from the general public, with specific emphasis on attempting to receive input from persons or groups with knowledge and experience in the area of chronic kidney disease, including, but not limited to, patients, caregivers, patient advocacy organizations, and nephrologists, and primary care providers;

BE IT FURTHER RESOLVED, that in planning CKD screening the Department of Health shall identify opportunities where disease education, CKD disease services, access to care, access to information and resources for CKD patients can all be improved;

BE IT FURTHER RESOLVED, that state Medicaid programs should work to ensure that high risk patients in state Medicaid programs are fully screened for CKD, including genetic testing if appropriate;

BE IT FURTHER RESOLVED, that state and federal policymakers take all necessary actions to identify and remove other impediments on CKD patients and their families, such as logistical and financial challenges, including missing work, childcare, and other issues, that may prevent or otherwise impede all patients including CKD patients from accessing needed care;

BE IT FURTHER RESOLVED, that payers should encourage and fund CKD screening and diagnosis, including appropriate; and

BE IT FINALLY RESOLVED, that a copy of this resolution be transmitted to the President of the United States, the Vice President of the United States, members of the United States House of Representatives and the United States Senate, and other federal and state government officials and agencies as appropriate.

• Resolution ID: HHS-23-16
• Sponsored by: Rep. Terry Alexander (SC)
• Policy Committee: Health and Human Services (HHS)

RENEWING OUR COMMITMENT TO MATERNAL HEALTH

WHEREAS, every person should be entitled to dignity and respect during and after pregnancy and childbirth, and patients should receive the best care possible regardless of age, race, ethnicity, color, religion, ancestry, disability, medical condition, genetic information, marital status, sex, gender identity, gender expression, sexual orientation, socioeconomic status, citizenship, nationality, immigration status, primary language, or language proficiency;

WHEREAS, the United States has the highest maternal mortality rate in the developed world, where about 700 women die each year from childbirth and another 50,000 suffer from severe complications;

WHEREAS, according to the North Carolina Maternal Mortality Review and Prevention Committee, sixty-three percent (63%) of all maternal deaths in 2014-2015 were determined to be preventable; and black women are at increased risk to die from pregnancy complications compared to white women;

WHEREAS, the federal Centers for Disease Control and Prevention finds that the majority of pregnancy-related deaths are preventable;

WHEREAS, pregnancy-related deaths among black birthing people are also more likely to be miscoded;

WHEREAS, access to prenatal care, socioeconomic status, and general physical health do not fully explain the disparity seen in maternal mortality and morbidity rates among black individuals, and there is a growing body of evidence that black people are often treated unfairly and unequally in the health care system;

WHEREAS, implicit bias is a key driver of health disparities in communities of color;

WHEREAS, health care providers in many states are not required to undergo any implicit bias testing or training;

WHEREAS, currently there does not exist any system to track the number of incidents where implicit prejudice and implicit stereotypes led to negative birth and maternal health outcomes; and

WHEREAS, it is in the interest of this State to reduce the effects of implicit bias in pregnancy, childbirth, and postnatal care so that all people are treated with dignity and respect by their health care providers.

THEREFORE, BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL) believes that it is our duty as public servants to enact legislation that will improve maternal health outcomes and eliminate these health disparities;

BE IT FURTHER RESOLVED, that NBCSL believes that each state should examine how to implement training for implicit biases within each state, specifically as it relates to maternal care; and

BE IT FINALLY RESOLVED, that a copy of this resolution be transmitted to the President of the United States, the Vice President of the United States, members of the United States House of Representatives and the United States Senate, and other federal and state government officials and agencies as appropriate.

• Resolution ID: HHS-23-21
• Sponsored by: Sen. Sen. Natalie Murdock (NC)
• Policy Committee: Health and Human Services (HHS)

CODIFYING THE SUPREME COURT DECISION, ROE V. WADE

WHEREAS, the Supreme Court’s decision to overturn Roe v. Wade—a legal precedent which upheld the constitutional right to privacy and freedom of choice regarding abortion—sets the clock back approximately 50 years and jeopardizes the health and lives of countless Americans;

WHEREAS, the right to safe and legal abortion is a fundamental human right and must be protected for all, especially in the aftermath of the Supreme Court’s dangerous decision;

WHEREAS, the current ruling will have a chilling effect on reproductive healthcare providers and their patients, and it will create a new and limiting landscape in how reproductive healthcare providers are trained;

WHEREAS, ending a pregnancy should not be criminalized by government;

WHEREAS, safe, legal, accessible, and affordable abortion care is essential for safeguarding health, reducing mortality and morbidity, enabling healthy spacing of pregnancies, and promoting health equity;

WHEREAS, eliminating constitutional rights to make decisions about one’s own body will adversely impact people of color and members of the LGBTQ+ community who encounter discrimination from health care providers at higher rates, have limited access to healthcare services and resources, face unequal pay, and are more likely than their White counterparts to lack health insurance;

WHEREAS, banning access to healthcare particularly exacerbates the risk of negative reproductive and maternal health outcomes, with lasting health and economic consequences for individuals and society as a whole;

WHEREAS, existing health inequities will hold true with access to reproductive care; those populations that face systemic oppression and have limited access to healthcare will be up against heightened challenges in seeking abortion care, affordable contraceptives, comprehensive reproductive health information and education, gender affirming care, and freedom from sexual violence;

WHEREAS, the Supreme Court ruling will make access to some abortions impossible or extremely difficult, depending on an individual’s location, gestation period, medical conditions, and other factors;

WHEREAS, a United States district court judge in North Carolina recently allowed a law that bans abortions after twenty weeks of pregnancy to be reinstated;

WHEREAS, reproductive health restrictions can have long-lasting negative mental, physical health and financial impacts on people’s lives;

WHEREAS, President Biden has issued an Executive Order to Protect Access to Abortion and Reproductive Health Services, including access to federally approved medication abortion; and

WHEREAS, we are committed to the protection of all women, trans, and gender non-conforming people’s access to reproductive healthcare and safe abortion.

THEREFORE, BE IT RESOLVED, that the National Black Caucus of State Legislators (NBSCL) urges Congress to immediately pass legislation to codify Roe v. Wade and protect the reproductive freedom of all persons who may need access to abortion care;

BE IT FURTHER RESOLVED, that NBCSL opposes any attempts by individual states to undermine women’s reproductive rights, and urges every state to also codify a woman right to choose when and if she has an abortion; and

BE IT FINALLY RESOLVED, that a copy of this resolution be transmitted to the President of the United States, the Vice President of the United States, members of the United States House of Representatives and the United States Senate, and other federal and state government officials and agencies as appropriate.

• Resolution ID: HHS-23-22
• Sponsored by: Sen. Natalie Murdock (NC)
• Policy Committee: Health and Human Services (HHS)

ADDRESSING LONGSTANDING MISTREATMENT OF SICKLE CELL PATIENTS IN HEALTHCARE FACILITIES

WHEREAS, Sickle cell disease is a severe, life-shortening inherited disease that affects the red blood cells and impacts predominantly people of color – especially African Americans;

WHEREAS, although the Centers for Disease Control and Prevention estimates that sickle cell disease affects more than 100,000 people in the United States, the exact number of people with sickle cell disease is unknown, comprehensive and coordinated data collection efforts are needed to better understand and quantify the scope and impact of sickle cell disease on patients, communities, states, and the nation;

WHEREAS, Sickle cell disease is a disease in which a person’s body produces abnormally shaped red blood cells that resemble a crescent or sickle, and that do not last as long as normal round red blood cells, which leads to anemia, and the sickle cells also get stuck in blood vessels and block blood flow, resulting in Vaso-Occlusive crises which can cause pain and organ damage;

WHEREAS, individuals living with sickle cell disease experience severe pain, anemia, organ failure, stroke, and infection; and in one recent study more than 30% of those diagnosed experienced premature death, and another recent study estimates that the life expectancy for individuals with sickle cell disease is 54 years;

WHEREAS, more than 40% of sickle cell disease patients are covered by Medicaid;

WHEREAS, in the more than 100 years since the underlying cause of sickle cell disease was discovered, the sickle cell patient community has received relatively little attention and few resources, and for decades, these individuals have suffered due to racial discrimination in the health care system in addition to life-threatening disease burden;

WHEREAS, individuals living with sickle cell disease encounter barriers to obtaining quality care and improving their quality of life, and these barriers include limitations in geographic access to comprehensive care, the varied use of effective treatments, the discrimination of being labelled “drug seekers” when seeking care during a crisis, the high reliance on emergency care, and the limited number of health care providers with knowledge and experience to manage and treat sickle cell disease;

WHEREAS, evidence-based clinical guidelines developed by the American Society of Hematology and the American College of Emergency Physicians recommend that individuals with sickle cell disease who present in the emergency room with a sickle cell crises be triaged and administered appropriate pain medications within 60 minutes;

WHEREAS, individuals living with sickle cell disease and their caregivers often report having to wait in emergency rooms for hours while experience severe pain crises, and receiving substandard care prior to discharge;

WHEREAS, many facilities do not have adequate clinical pathways and treatment protocols based on evidence based clinical guidelines pertaining to management of sickle cell disease patients, particularly those experiencing pain crises;

WHEREAS, there is currently one curative therapy option for a limited number of individuals living with sickle cell disease, which is a bone marrow transplant from a matched donor, but the treatment may result in fertility issues;

WHEREAS, the vast majority of states do not currently provide fertility preservation programs for Medicaid beneficiaries, including those living with sickle cell disease who receive curative therapies which may result in fertility issues;

WHEREAS, State governments have tools at their disposal to incentivize or require health care providers, facilities, and entities receiving state monies or licensed by the state to encourage the advancement or adoption of policies to improve care, outcomes, and cost effectiveness; and

WHEREAS, The National Black Caucus of State Legislators (NBCSL) represents communities and states across the country most affected by sickle cell disease.

THEREFORE, BE IT RESOLVED, that NBCSL urges state and federal policymakers to ensure that individuals with sickle cell disease have access to all medications and forms of treatment for sickle cell disease, and services for enrollees with a diagnosis of sickle cell disease, that are eligible for coverage under Medicare and Medicaid programs;

BE IT FURTHER RESOLVED, that state Medicaid programs and/or Departments of Health consider the implementation of requirements or incentives to encourage health care institutions to adopt and implement clinical pathways and treatment protocols pertaining to the management of sickle cell disease patients, including in the emergency room;

BE IT FURTHER RESOLVED, that state Medicaid programs and/or Departments of Health shall meet with local and regional community-based organizations representing individuals living with sickle cell disease to understand challenges and barriers impacting access to care;

BE IT FURTHER RESOLVED, that NBCSL believes that institutions should provide high quality, evidence-based care for individuals living with sickle cell disease; and potential opportunities to improve care, outcomes, and cost-effectiveness of care;

BE IT FURTHER RESOLVED, that states shall work with stakeholders, including patients, caregivers, healthcare providers, medical licensing boards, medical colleges, and others, to consider the assignment or availability of continuing medical education for healthcare providers regarding sickle cell disease, including regarding the availability of new treatment guidelines and therapies;

BE IT FURTHER RESOLVED, that state legislatures, Medicaid programs and/or Departments of Health evaluate and implement policies requiring insurers, public and private, to provide comprehensive fertility preservation therapy for individuals that could be rendered infertile by medically necessary treatments, including individuals living with sickle cell disease considering potentially curative treatments;

BE IT FURTHER RESOLVED, that state and federal policymakers take all necessary actions to identify and remove other impediments on patients and their families, such as logistical and financial challenges, including missing work, childcare, and other issues, that may prevent or otherwise impede all patients including sickle cell patients from accessing potentially curative therapies; and

BE IT FINALLY RESOLVED That a copy of this resolution be transmitted to the President of the United States, the Vice President of the United States, members of the United States House of Representatives and the United States Senate, and other federal and state government officials and agencies as appropriate.

• Resolution ID: HHS-23-27
• Sponsored by: Sen. Raumesh Akbari (TN)
• Policy Committee: Health and Human Services (HHS)