Health and Human Services (HHS) Policy Committee

INCREASING ACCESS TO SAFE MATERNITY CARE

WHEREAS, the National Black Caucus of State Legislators (NBCSL) has long seen safe and effective maternal health care as critical to improving quality health care and safety in the United States and passed numerous resolutions in support of this issue including resolution HHS-20-07 “A RESOLUTION ON IMPROVING OUTCOMES FOR MOTHERS AND CHILDREN DURING PREGNANCY”;

WHEREAS, obstacles to healthcare are widespread, and while the United States spends more on healthcare per capita than any other nation, funding for certain conditions still falls short of demand and pregnancy and childbirth-related hospital costs have now reached $86 billion;

WHEREAS, the United States has the highest maternal mortality rate of all other developed countries with 17.4 maternal deaths for every 100,000 births, half of which have been deemed preventable;

WHEREAS, preterm births cost society at least $26 billion or $51,600.00 per premature baby per year, including money spent on medical care for short and long-term health conditions, educational expenditures, and lost productivity for families of those babies who survive;

WHEREAS, nearly 13 million women of reproductive age (from 15 to 44 years of age), or one in five, have no health insurance;

WHEREAS, women of color account for just under one-third of all women in the United States but represent half of all uninsured women;

WHEREAS, women of color are more likely to experience discriminatory and inappropriate treatment and poorer quality of care;

WHEREAS, Black mothers are three to four times more likely to die from pregnancy-related causes than their white counterparts;

WHEREAS, there is a shortage of Black healthcare providers, according to the American Medical Col-leges only 2.6% of doctors in 2019 and 7.3% of students enrolled in medical schools identify as Black or African American;

WHEREAS, the Black infant mortality rate is more than twice as high as it is for white infants;

WHEREAS, studies suggest that the mortality disparity decreases between Black infants and white infants when Black infants are treated by Black healthcare providers and that racism, implicit bias, and lack of cultural competency play a major role in infant and maternal morbidity and mortality;

WHEREAS, the NBCSL strongly supports proven healthcare models, and the promotion of good healthcare policies with a view toward increasing equity, diversity, and access for all;

WHEREAS, it is vital that birthing mothers and their families have access to perinatal care teams incorporating safe maternal healthcare providers, which include community healthcare workers and community midwives;

WHEREAS, there is an urgent need to recruit, train, and deploy a diverse and interdisciplinary maternal child healthcare workforce so that all birthing mothers, their families, and infants receive un-restricted access to equitable maternity care and support which is essential for improved health outcomes;

WHEREAS, it is important to recruit maternal child community-based healthcare providers who are from racially, ethnically, and linguistically diverse backgrounds with experience practicing in racially and ethnically diverse communities or providers who have undergone training on implicit bias and racism and who understand the impact of cultural congruence and cultural safety in service de-livery;

WHEREAS, there is a need to increase the investment and for the expansion of a community- based perinatal healthcare workforce must begin with recruiting, training, and reimbursing maternal health and community healthcare workers, community midwives, nurses and nurse practitioners, behavioral health and lactation specialists, physician assistants, and physicians to provide collaborative, culturally congruent maternity care and psychosocial support, including virtual and telehealth prenatal and postpartum services when necessary;

WHEREAS, fully-trained community healthcare workers cover all aspects of the childbearing cycle, including pregnancy, birth and postpartum, and reproductive health;

WHEREAS, such fully-trained community healthcare workers effectively teach across the life- course with evidence-based information, provide wrap-around support, and health navigation, which includes creating liaisons and trusted relationships with other healthcare providers and agencies;

WHEREAS, well trained and certified community midwives specialize in low-risk, clinical maternal child healthcare emphasizing respectful interpersonal relationships, health promotion with preventative care, health education, continuity care, ongoing risk assessments, and referral to collaborative perinatal healthcare team members, including mid-level providers, physicians, and specialists when necessary;

WHEREAS, community healthcare workers and community midwives are trained and able to sup-port families throughout the childbearing years and such workers and midwives should have access to dedicated fee schedules to compensate the vital perinatal services they offer; and

WHEREAS, community healthcare workers and community midwives create a readily achievable, economically viable, and sustainable solution that fully embraces “The Triple Aim” of better care, better health, and reduced costs.

THEREFOR BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL), in response to the Black maternal and child health crisis in the United States calls for a State of Emergency for Black birthing mothers and their families and urges legislators to implement and support legislation needed to diversify the maternal child workforce;

BE IT FURTHER RESOLVED, that the NBCSL recognizes the urgent need for recruiting, training, deploying, and reimbursing a diverse maternal child healthcare workforce to address the rising rate of maternal and infant morbidity and mortality and proposes increasing access to community healthcare workers and well-trained community midwives;

BE IT FURTHER RESOLVED, that the NBCSL urges states to implement and support existing community-based, community-led programs that train, support, and employ community healthcare workers or community midwives, as well as support their equitable, value-based reimbursement through Medicaid, Managed Care, and commercial payers and other funders;

BE IT FURTHER RESOLVED, that the NBCSL urges the United States Congress to fully fund programs that increase safe maternity care and support for all childbearing people; 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 Unites 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.

• SPONSOR: Senator Lester Jackson (GA)
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
• Ratified in Plenary Session: December 2, 2021
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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CULTURAL AWARENESS TO IMPROVING HEALTHCARE OUTCOMES

WHEREAS, the Nation Black Caucus of State Legislators believes that the increasing diversity of the nation brings opportunities and challenges for health care providers, health care systems, and policy makers to create and deliver culturally competent services and increase the standard of care;

WHEREAS, cultural competence training for health care professionals focuses on acquiring the knowledge and skills that value diversity and respond to cultural differences;

WHEREAS, the goal of culturally competent health care services is to provide the highest quality of care to every patient, regardless of race, ethnicity, cultural background, language proficiency or literacy;

WHEREAS, differences between healthcare providers and patients can affect communication, and in turn  this can, in turn, impact both clinicians’ and patients’ decisions with regard to treatment;

WHEREAS, according to the Center for Disease Control (CDC), data on race and ethnicity for more than 90% of the people who died from COVID-19 reveals that the percent of Hispanic or Latino, non-Hispanic black, and non-Hispanic American Indian or Alaska Native people who have died from COVID-19 is higher than the percent of these racial and ethnic groups among the total U.S. population;

WHEREAS, according to Tulane University’s School of Public health and Tropical Medicine, when healthcare providers fail to recognize the differences between them and their patients, they may inadvertently deliver lower-quality care;

WHEREAS, language and communication problems may also lead to patient dissatisfaction, poor comprehension and adherence, and lower quality of care;

WHEREAS, according to the Center on an Aging Society, of the more than 37 million adults in the U.S. who speak a language other than English, over 18 million people, 48 percent, report that they speak English less than “very well, thus language and communication barriers can affect the amount and quality of health care received;

WHEREAS, if the providers, organizations, and systems are not working together to provide culturally competent care, patients are at higher risk of having negative health consequences, receiving poor quality care, or being dissatisfied with their care;

WHEREAS, African Americans and other ethnic minorities typically report less partnership with physicians, less participation in medical decisions, and lower levels of satisfaction with care;

WHEREAS, as noted in the American Journal of Public Health, the quality of patient- physician interactions are lower among non-White patients, particularly Latinos and Asian Americans, and lower quality patient-physician interactions are associated with lower overall satisfaction with health care;

WHEREAS, patients whose providers completed cultural competence training report better opinions of their clinicians or participate longer in mental health counseling than patients whose providers did not; and

WHEREAS, cultural competence trainings can provide facts about patient cultures or include more complex interventions such as intercultural communication skills training, exploration of potential barriers to care, and institution of policies that are sensitive to the needs of patients from culturally and linguistically diverse backgrounds.

THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL) urges legislators, health care providers and key stakeholders to achieve more fair, just, equitable and effective outcomes by embracing a cultural competency training programs;

BE IT FURTHER RESOLVED, that the NBCSL urges Congress to pass legislation and fund programs that will promote cultural competency training, thus helping to decrease the racial, ethnic, gender language, disability, and socio-economic disparities apparent today within health 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 Unites 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.

• SPONSOR(S): Representative. Gregory Porter (IN), Representative Cherrish Pryor (IN), and Representative Robin Shackleford (IN)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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ADDRESSING VACCINE HESITANCY IN COMMUNITIES OF COLOR

WHEREAS, “Vaccine Hesitancy” comes from an assemblage of fears, deliberation, and questioning and should not be dismissed, miscategorized, to make it more palatable as being ‘hesitant’;

WHEREAS, systemic racism, institutional oppression, and a lack of diversity in medicine, biomedical research, public health, and the government have contributed to mistrust in communities of color which has affected vaccination progress;

WHEREAS, legislation cannot immediately solve the mistrust in our healthcare system due to 400+ years of Black and Brown people being used for medical research and experiments without permission and proper treatment;

WHEREAS, while we can point to the United States Public Health Service’s Syphilis Study at Tuskegee, where nearly 400 Black men in a United States Public Health Service and the Centers for Disease Control and Prevention between 1932 and 1972 in an ethically abusive study, were untreated, there has been a long history of exploitation since colonization due to a lack of medical ethics that should have protected Black and Brown people;

WHEREAS, distrust today still exists, policymakers can provide workers ways to alleviate their concerns related to costs, time, and job security;

WHEREAS, some lower wage workers shun vaccination for fear of losing a day’s pay to get the vaccine, or needing time off for possible side effects that could force them to miss more time;

WHEREAS, these workers make the tough decision of missing time if they must take their parents to get vaccinated as well as take care of them because they fear losing even a day’s pay is terrifying for those already trying to catch-up on bills, expenses, etc. that piled-up during the closure mandates;

WHEREAS, according to the Kaiser Family Foundation (KFF) COVID-19 Vaccine monitor, (an ongoing research project tracking the public’s attitudes and experiences with COVID-19 vaccinations), unvaccinated Hispanic and Black adults are more likely than White adults to cite worries about missing work and having to pay for the vaccine as major reasons for not being vaccinated;

WHEREAS, in addition, unvaccinated Hispanic adults are more likely than unvaccinated White adults to say they are too busy, or would have difficulty traveling to a vaccination site, and are not sure how or where to get the vaccine;

WHEREAS, nearly 20% of all workers said they haven’t gotten vaccinated yet because they’re afraid of missing work or because they’re too busy;

WHEREAS, that proportion jumps to 26% for Black workers and 40% for Hispanic workers;

WHEREAS, 65% of workers were encouraged by their employer to get a COVID-19 vaccine;

WHEREAS, 50% overall say their employer provides them with paid time off to get a COVID-19 vaccine and recover from any side effects. However, among:

• Black workers (38%)
• those without college degrees (41%)
• household incomes less than $40,000 annually (41%)
• workers who don’t have health insurance, just one-third (33%) say their employer provides paid time off for vaccine administration and side effects;

WHEREAS, it is not enough for employers to verbally encourage vaccinations, nor is it equitable to make vaccination mandatory if there is no system in place to assure these workers that their jobs are safe;

WHEREAS, job insecurity, change in household dynamics, and future uncertainty are contributing to higher Pandemic Post Traumatic Stress Disorder (PTSD) for lower wage workers than full-time employees, and low-wage, hourly, and contract workers may not have access to Employee Assistance Programs (EAP);

WHEREAS, according to McKinsey & Co. Center for Societal Benefit of Healthcare, those working in essential jobs that cannot be done from home are concerned with access to healthcare, reluctant to access health care due to historical trauma and racism, lack of health insurance coverage, lack of ability to pay for health care, and difficulties with transportation and getting time off work;

WHEREAS, because we do not have an equitable healthcare system, during the pandemic, legislation is required to ensure that these workers have access to the same EAP benefits as full-time employees; and

WHEREAS, it is imperative that we identify ALL workers at elevated risk of PTSD; provide resources for risk mitigation; and focus on prevention strategies or ways to lessen the PTSD burden.

THEREFORE BE IT RESOLVED, the National Black Caucus of State Legislators (NBCSL) urges the US Congress and state legislatures to do the following:

• Paid time off for lower-wage, hourly, and contract employees to get vaccinated as well as the following day to recoup from soreness, muscle aches, and other side effects
• Paid time off for these workers to take parents, children, and immediate household members to get vaccinated and the time need to assist them as loved one(s) recoup from the side effects
• Assistance with locating the closest vaccination site, as not every household has broadband, WIFI, smartphones, laptops, etc.
• Employer cover transportation costs to and from vaccination site if needed
• Extend EAP benefits and healthcare plan options to these workers, equal to full-time employees
• Clearly communicate the options that are available to get vaccinated; access to EAP benefits; and the differences in healthcare plan options
• Ensure that all communications will be available in the language of the employee;

BE IT FURTHER RESOLVED, that the NBCSL supports public information campaigns aimed at the vaccine hesitancy in communities of color, and efforts to ensure that vaccination sites are readily available in communities of color; 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 Unites 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.

• SPONSOR: Representative London Lamar (TN)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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RECOGNIZING DOULAS AS VITAL MEMBERS OF THE CHILDBIRTH TEAM

WHEREAS, a doula is defined as a trained, non-medical person who provides physical, emotional, and educational support before, during, and after childbirth;

WHEREAS, according to The White House A Proclamation on Black Maternal Health Week, 2021, America’s maternal mortality rates are among the highest in the developed world, and they are especially high among Black mothers, who die from complications related to pregnancy at roughly two to three times the rate of white, Hispanic, Asian American, and Pacific Islander women — regardless of their income or education levels;

WHEREAS, according to the Centers for Disease Control and Prevention, in 2019, the maternal mortality rate for non-Hispanic black women was 44.0 deaths per 100,000 live births, 2.5 times the rate for non-Hispanic white women (17.9) and 3.5 times the rate for Hispanic women (12.6);

WHEREAS, according to the Institute for Healthcare Improvement, for Black women, income level, education, and insurance access do not serve as protective factors against maternal mortality as they do for White women due to structural and systemic racism as well as implicit and explicit bias;

WHEREAS, as it currently stands, most doula care is not a covered healthcare service in most states, and clients are forced to pay out of pocket; people with low income and communities of color, who would benefit the most, are left without access, creating a noticeable health disparity;

WHEREAS, pregnant and postpartum people receiving doula care have been found to have improved health outcomes for themselves and their infants, including higher breastfeeding initiation rates, fewer low birthweight babies, and lower rates of cesarean births;

WHEREAS, doulas offer a unique opportunity for healthcare systems to reduce workloads for nurses and frontline providers with many simultaneous responsibilities, retain patients for future pregnancies and other services, and attract new patients by providing a unique, valuable service;

WHEREAS, the benefits of doula care can also have a financial impact in helping families and the State avoid the cost associated with low birthweight babies, cesarean births, and other pregnancy-related complications; and

WHEREAS, in response to the COVID-19 pandemic, area hospitals in across the country amended their visitor policies from prohibiting all visitors, to allowing a professional or certified doula to be present during childbirth, thus recognizing their essential nature.

THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL), recognize that doulas are both vital childbirth team members and community health workers and acknowledge their contribution in ending maternal and infant health disparities;

BE IT FURTHER RESOLVED, that the NBCSL believes that the benefits of doulas in childbirth should be examined for the long-term cost saving potential for private health care plans and government covered plans like Medicaid; 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 Unites 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.

• SPONSOR(S): Representative London Lamar (TN) and Representative Karen Camper (TN)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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EQUAL ACCESS TO HIV PREVENTION AND TREATMENTS

WHEREAS, the National Black Caucus of State Legislation (NBCSL) has long sought to address HIV and AIDS, as in 2019 alone, an estimated 36,801 people received an HIV diagnosis in the US;

WHEREAS, in 2019, the U.S. Department of Health and Human Services (HHS) launched the Ending the HIV Epidemic (EHE) initiative with the goal of reducing new HIV infections by 90 percent by 2030, and prevention is one of four key pillars of the EHE initiative, along with Diagnosis, Treat, and Respond;

WHEREAS, the HIV National Strategic Plan (HIV Plan) indicates that for the EHE to reach its intended goal, public and private partners must work together to educate and implement change;

WHEREAS, the racial disparity in HIV rates in the U.S. indicates a need for renewed focus on HIV prevention among Black and Latino Americans, because Black and Latino Americans only comprise 13 and 18 percent of the total US population, yet they account for 41 and 23 percent of the people with HIV, respectively, these populations account for a higher proportion of new HIV diagnoses and people with HIV, compared to other races and ethnicities;

WHEREAS, while data shows 76% of African Americans in the U.S. report being tested for HIV at least once, one in 7 are not aware that they are HIV positive, and 20% of African Americans were diagnosed late with HIV (i.e., diagnosed with AIDS within 3 months of an initial HIV diagnosis), putting them at risk for worse health outcomes and increasing the risk of transmitting HIV to their partners;

WHEREAS, these disparities in diagnosis in health are driven by a broad range of factors, including but not limited to mistrust of the healthcare system, poverty, racism, homophobia, stigma, and discrimination;

WHEREAS, similar health care disparities have surfaced during the current COVID-19 pandemic;

WHEREAS, African Americans may face greater risks from limited access to necessary medical care for specific diseases and conditions;

WHEREAS, while certain utilization management practices can help control health care costs, prior authorizations or other limitations may in some cases inhibit or delay access to necessary medical care, including prescription drugs, thereby further negatively affecting health outcomes associated with HIV and other conditions;

WHEREAS, a disproportionate share of African Americans are enrolled in Medicaid programs across the United States, as of 2019 there were estimated to be 42 million African Americans in the U.S., comprising 13.4% of total population, while making made up roughly 33% of all Medicaid enrollees;

WHEREAS, people without health insurance or enrolled in Medicaid may experience health literacy barriers due to the social determinants of health disproportionately impacting them’ and this may limit an individual’s ability to recognize, and advocate for necessary medical care, including treatment that is best suited for their health needs;

WHEREAS, these barriers also adversely affect the ability of patients to engage in a shared decision-making approach with their providers;

WHEREAS, prior authorizations and other coverage and access limitations may interfere with clinically appropriate patient-centered choices for medical treatments and create barriers for doctors, nurses, and other health care providers serving the Medicaid population;

WHEREAS, state agencies may select preferred drugs, based on the medicines’ effectiveness within the general population, without enough regard to considerations specific to certain populations, such as African Americans and Hispanic Americans;

WHEREAS, the uninsured and Medicaid patients may be discouraged from beginning, or continuing, clinically appropriate treatments by delays in access that may occur when health care providers and patients must navigate the Medicaid or other state prior authorization and appeals procedures;

WHEREAS, treatment delays while providers obtain required prior authorization approvals also may adversely affect the plans in place across the country to help end the HIV epidemic;

WHEREAS, the U.S. Food and Drug Administration (FDA) has approved multiple pre-exposure prophylaxis (PrEP) medications that are extremely effective at preventing individuals from acquiring HIV from sex or injection drug use;

WHEREAS, studies have shown a correlation between increased PrEP uptake and decreases in new HIV diagnoses in the U.S.;

WHEREAS, PrEP use is also associated with increased engagement in ongoing health care;

WHEREAS, inequities in access to PrEP across populations vulnerable to HIV have led to increasing disparities in HIV incidence, transmission, and viral suppression, with a lower percentage of Black and Hispanics actively taking PrEP or had discussion with a healthcare provider about prescribing PrEP;

WHEREAS, in order to support EHE efforts to expand access to HIV prevention therapies, all health care providers should be educated on the value of PrEP, and should be available to provide PrEP when an individual is ready for it;

WHEREAS, states should prioritize access to PrEP, including new innovative modalities, by enforcing Affordable Care Act requirements that USPSTF Grade A or B rated services should be available to beneficiaries at zero cost share in Medicaid expansion populations and under private insurance programs; and

WHEREAS, states should support the under and uninsured populations and create state PrEP programs with state appropriations.

THEREFORE BE IT RESOLVED that the National Black Caucus of State Legislators (NBCSL) supports legislation to ensure patient access to clinically appropriate prescription drugs and related health care services by recognizing the importance of open access to all FDA approved HIV medications;

BE IT FURTHER RESOLVED, that NBCSL believe that additional steps should be taken to safeguard affordable and continuous patient access to HIV related health care services and treatments;

BE IT FURTHER RESOLVED that the NBCSL recognizes the importance of PrEP to the Ending the HIV Epidemic Initiative, and the goal of public and private partnerships in support of the HIV Plan, and the critical importance of access to HIV prevention treatment and services to improve health outcomes, reduce health disparities and reduce transmission of HIV, and encourages state policymakers to implement policies to do the same; 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 Unites 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.

• SPONSOR(S): Representative Lamont Robinson (IL), Senator Shevrin Jones (FL), and Representative Karen Camper (TN)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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RECOGNIZING TRIPLE-NEGATIVE BREAST CANCER

WHEREAS, breast cancer is among the most commonly diagnosed cancer and the second leading cause of cancer death among women in the United States;

WHEREAS, approximately 281,550 women will be diagnosed with breast cancer and nearly 43,600 will die with this malignancy in 2021;

WHEREAS, Triple Negative Breast Cancer is one of many forms of breast cancer and accounts for about 15-30% of all diagnosed invasive breast cancer cases in the United States;

WHEREAS, more than 53,700 new breast cancer cases in 2019 in the United States were Triple Negative Breast Cancer with higher prevalence among younger women, Black and Hispanic women, women with type 2 diabetes or carrying excess weight in the abdomen area, and those with BRCA1 mutations;

WHEREAS, due to its aggressive behavior, Triple Negative Breast Cancer grows quickly and is more likely to have spread at the time it is found and is more likely to come back after treatment than other types of breast cancer,

WHEREAS, people diagnosed with metastatic Triple Negative Breast Cancer have a less than 30% chance of surviving past five (5) years;

WHEREAS, Triple Negative Breast Cancer cells do not contain (are “negative for”) three key receptors that medicines typically target in other types of breast cancers; therefore, there are limited treatment options that can be used to treat the cancer;

WHEREAS, patients with an early diagnosis can often be treated with chemotherapy, radiation, and surgery; however, the limited therapies available specifically addressing the management of Triple Negative Breast Cancer has made treating this disease a challenge for clinicians;

WHEREAS, recent innovation in targeted therapies have fueled advances in the fight against Triple Negative Breast Cancer;

WHEREAS, studies have shown that Triple Negative Breast Cancer disease-specific mortality rates are often higher if patients have Medicaid or Medicare or are lower socio-economic status; and compared with non-Hispanic white women, Black women are 48% less likely to receive guideline adherent care and have an approximate 2-fold higher mortality incidence, resulting in a disproportionately higher risk of death from Triple Negative Breast Cancer;

WHEREAS, advances in breast cancer screening and treatment over the last few decades have reduced the overall breast cancer mortality rate, yet the  disproportionate impact of Triple Negative Breast Cancer on racial and ethnic minority communities raises considerations about the underlying determinants driving the disparities; and

WHEREAS, it is necessary to promote Triple Negative Breast Cancer education, raise awareness about the disease-related disparities, and tackle inequities within the health care delivery such as inadequate access to screening, diagnostic testing, and care, to improve early detection and survival.

THEREFORE, BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL) supports legislation to reduce Triple Negative Breast Cancer disparities in early detection and survival by improving education and awareness through health promotion initiatives targeting underserved communities disproportionately impacted, ensuring equitable access and affordability of breast cancer screening, genetic counselling, and diagnostic testing, promoting cultural sensitivity and workforce diversity policies in health care provider training, and timely patient access to clinically appropriate treatment; and

BE IT FURTHER RESOLVED, that states should examine all options to safeguard affordable, continuous, and equitable patient access to Triple Negative Breast Cancer related care, services, and medicines along the entire continuum of 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 Unites 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.

• SPONSOR: Representative Kamia Brown (FL)
  Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  Ratified in Plenary Session: December 2, 2021
  Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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SUPPORTING INNOVATIVE THERAPIES FOR SICKLE CELL DISEASE

WHEREAS, the National Black Caucus of State Legislators (NBCSL) has a long commitment to combating sickle cell disease and has passed and adopted Resolution HHS-21-17 A RESOLUTION ON EQUITABLE ACCESS FOR TRANSFORMATIVE THERAPIES FOR SICKLE CELL DISEASE.

WHEREAS, sickle cell disease (SCD) is a severe, life-shortening inherited disease that affects the red blood cells and impacts predominantly people of color –particularly African Americans;

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. 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, 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, there is a need for comprehensive and coordinated data collection efforts to better understand and quantify the scope and impact of sickle cell disease on patients, communities, states, and the nation;

WHEREAS, according for the Centers for Medicare and Medicaid Services 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 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, 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, after decades of relatively little progress being made in therapeutic innovations for sickle cell disease, several therapies for sickle cell disease have been approved in the last few years, providing patients and their physicians with new therapeutic options to manage and treat their condition;

WHEREAS, with several rapidly progressing one-time genetic therapies in clinical development, we are now on the verge of a potential cure for some patients living with sickle cell disease, these investigational approaches are still being evaluated in clinical trials, such therapies have the potential to revolutionize the practice of medicine and transform the lives of individuals living with sickle cell disease;

WHEREAS, scientific and medical research advances need to be coupled with health care delivery and payment policies to ensure universal access to innovative pipeline products, particularly for Medicaid beneficiaries;

WHEREAS, at present, gaps of care exist within sickle cell disease and are most glaring within the Medicaid system, but exist for Medicare beneficiaries and patients enrolled in private coverage as well;

WHEREAS, the NBCSL represents communities and states across the country most affected by sickle cell disease;

WHEREAS, there is a need for states to provide open access to therapies that treat SCD, particularly innovative therapies that have been approved in recent years to treat the underlying cause of the disease;

WHEREAS, SCD treatments have improved over the years and new ones are emerging from drug company pipelines patients still face serious complications, high rates of hospitalization and early death compared to the general population. patients are experiencing sub-optimal access due to Medicaid health plans imposing prior authorization and step therapy requirements;

WHEREAS, there is a need to advocate for the ability to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for all people in the world with sickle cell disease;

WHEREAS, to effectively prevent, or treat hemoglobin disorders, efforts would require the strengthening of existing medical and genetic services, in low-and middle-income communities;

WHEREAS efforts should focus on the identification and the promotion of affordable interventions, including but not limited to community education, training of health professionals, newborn screening for early diagnosis sickle cell disease;

WHEREAS, involving other potential stakeholders, such as patients/parents’ organizations and other national and international health related agencies would significantly contribute towards efforts relating to advocacy, technology transfer and capacity building; and

WHEREAS, the transition from pediatric to adult healthcare is a critical time for SCD patients, and mortality rates and total treatment costs significantly increase during the young adult years.

THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators (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 and work to include new and effective treatments;

BE IT FURTHER RESOLVED, that state Medicaid programs should conduct an annual review to determine if the available covered medications, treatments, and services are adequate to meet the needs of enrollees with a diagnosis of sickle cell disease, and whether Medicaid should seek to add additional medications, treatments, or services;

BE IT FURTHER RESOLVED, that when conducting the annual review, the state Medicaid program 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 sickle cell disease treatment, including, but not limited to, patients, caregivers, patient advocacy organizations, and hematologists/treating physicians, and other healthcare professionals;

BE IT FURTHER RESOLVED, that, when conducting the annual review, the state Medicaid program and/or the appropriate state agency such as the Department of Health shall identify opportunities where disease education, sickle cell disease services, access to care, access to information and resources for sickle cell disease patients can all be improved;

BE IT FURTHER RESOLVED, that state Medicaid programs should proactively explore innovative reimbursement, coverage and access approaches which may facilitate equitable and appropriate access to potential curative one-time therapies for eligible patients, which may include separate payments from inpatient bundling, outcomes-based arrangements, and other innovative approaches;

BE IT FURTHER RESOLVED, that state Medicaid programs and other state officials should convene a multi-stakeholder dialogue, including patients, caregivers, physicians, and hospital administrators, to inform and begin working toward policies that will support equitable and appropriate access to innovative sickle cell disease therapies;

BE IT FURTHER RESOLVED, that states and the Federal government should explore enhanced and expanded data collection efforts to determine how many people live with sickle cell disease in the United States, how sickle cell disease affects their health, and how researchers can improve medical treatments to extend and improve the lives of people with sickle cell disease, as well as to better inform policies that impact the sickle cell disease patient community;

BE IT FURTHER RESOLVED, that the NBCSL urges state and federal policymakers to examine and address, when possible, the regulatory barriers that have and may continue to impede patient access to novel therapies, including one-time, potentially curative therapies;

BE IT FURTHER RESOLVED, that state Medicaid programs should work to ensure that sickle cell patients in state Medicaid programs have access to potentially curative therapies when those treatments are proven and federally approved;

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.

• SPONSOR(S): Senator Raumesh Akbari, Representative Billy Mitchell (GA), Representative Harold Love (TN), and Representative Karen Camper (TN)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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CALLING FOR THE HUMANE TREATMENT OF PREGNANT AND POSTPARTUM WOMEN

WHEREAS, the National Black Caucus of State Legislators (NBCSL) has reliably advocated for the enhancement of women’s rights – especially issues affecting the African American community;

WHEREAS, between five and 10 percent of women that enter prison and jail are pregnant, and approximately 2,000 babies are born to incarcerated women annually according to the American Medical Association;

WHEREAS, historically, Black women are twice as likely to be incarcerated than white women;

WHEREAS, in 2019, the Prison Law Office found that pregnant women or recently pregnant women universally reported receiving inadequate nutrition during their pregnancies;

WHEREAS, the risk for a poor pregnancy outcome is significantly higher in incarcerated women than women who are not incarcerated;

WHEREAS, nearly 20% of pregnancies in incarcerated women result in miscarriages and premature births, which exceeds the national average of 10% according to the Prison Policy Initiative;

WHEREAS, restraining pregnant women exacerbates pain, increases the risk of complications, and limits critical medical care during childbirth;

WHEREAS, the practice of handcuffing pregnant women would disproportionately traumatize, or retraumatize, Black incarcerated women; and

WHEREAS, it is an assault on human dignity and inhumane to not provide necessary health care for incarcerated pregnant women, postpartum women, and their children.

THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL) supports equitable standards of care and protection that can safely be achieved for incarcerated pregnant women, postpartum women, and their children as they would receive if they were not incarcerated;

BE IT FURTHER RESOLVED, that the NBCSL urges penal institutes, correctional facilities, detention centers or county jails to use the least restrictive physical restraints and control techniques on incarcerated pregnant women and recently pregnant women;

BE IT FURTHER RESOLVED, that correctional facilities should be required to provide postpartum inmates access to breast pumps and the departments of health should provide breast pumps to pregnant inmates free of charge;

BE IT FURTHER RESOLVED, that correctional facilities allow visits to enable breastfeeding of the inmate’s child or allow for the timely collection of the breast milk expressed by the inmate for the child;

BE IT FURTHER RESOLVED, that the NBCSL urges federal, state, and local governments to adopt policies that use the least restrictive physical restraints on incarcerated pregnant women and postpartum women and explore non-restrictive techniques throughout their pregnancy and during the birthing process; 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.

• SPONSOR(S): Senator Raumesh Akbari (TN) and Representative Karen Camper (TN)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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IMPROVEMENT IN CARE OF ATHEROSCLEROTIC CARDIOVASCULAR DISEASE

WHEREAS, the National Black Caucus of State Legislators has long sought to combat cardiovascular disease is as the leading cause of death in the United States;

WHEREAS, in the US, approximately 21 million patients have been diagnosed with atherosclerotic cardiovascular disease (ASCVD) and are at risk of a cardiovascular event according to the US Census Bureau;

WHEREAS, the Mayo Clinic states that ASCVD is linked to the build-up of cholesterol in the arteries, and the risk of associated events can be modified by lowering low-density lipoprotein cholesterol (LDL-C);

WHEREAS, in 2016, nearly 70 million US adults had higher than recommended LDL-C levels;

WHEREAS, 43.1 million people in the US are currently treated with lipid-lowering therapies to manage cardiovascular risk;

WHEREAS, only 20% of people with ASCVD who are taking statins, one of the leading lipid-lowering therapies, actually achieve healthy levels of LDL-C;

WHEREAS, the total direct and indirect cost of ASCVD in the US was $555 billion in 2016, and is projected to climb to $1.1 trillion by 2035 according to the American Heart Association;

WHEREAS, according to the Centers for Disease Control and Prevention (CDC) heart disease is the leading killer of Black Americans, and ASCVD kills over 46,000 Black Americans each year;

WHEREAS, 9.2% of Black Americans have been diagnosed with ASCVD by a health care professional; and

WHEREAS, Black Americans are 35% less likely than non-Hispanic white Americans to report use of cholesterol-lowering statin therapy, despite similar rates of cholesterol across all races according to the CDC.

THEREFORE IT BE RESOLVED, that the National Black Caucus of State Legislators (NBCSL) urges state governments to expand routine cholesterol screening and other cardiovascular screening to allow for earlier identification of patients at risk of cardiovascular events;

BE IT FURTHER RESOLVED, that the NBCSL urges an update of the state’s cardiovascular plan to accelerate quality improvements in the care rendered to these patients such that screening, treatment, monitoring, and improved health outcomes are achieved;

BE IT FURTHER RESOLVED, that the National Black Caucus of State Legislators supports the creation of policies to decrease the rising number of deaths of Americans as a result of ASCVD; 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 Unites 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.

• SPONSOR: Senator Raumesh Akbari (TN)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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OSTEOPOROSIS AND THE IMPACT ON BLACK WOMEN

WHEREAS, an estimated 54 million Americans have osteoporosis or low bone mass, placing them at increased risk for osteoporosis according to the National Osteoporosis Foundation;

WHEREAS, studies suggest that approximately 1 in 2 women and up to 1 in 4 men aged 50 and older will break a bone due to osteoporosis;

WHEREAS, bone fractures due to osteoporosis can have serious long-term physical and financial consequences;

WHEREAS, after the first bone fracture, postmenopausal women with osteoporosis are five times more likely to fracture a bone within the next year;

WHEREAS, persons who are living with osteoporosis often remain undiagnosed and untreated;

WHEREAS, black women are less likely to receive medicine to treat osteoporosis and prevent fractures with only 8.4% of black women received meds vs 13.6% of high-risk women;

WHEREAS, black women were 18% less likely to receive medicine following a fracture compared to whites and are also less likely to be screened for osteoporosis compared with white women;

WHEREAS, a woman’s risk of fracturing a hip is equal to her combined risk of being diagnosed with breast, uterine, and ovarian cancer;

WHEREAS, Medicare payments for screenings for bone loss do not adequately cover the cost of the test and therefore deters these screenings; and

WHEREAS, there are lifestyle modifications (regularly engaging in weight-bearing physical activity, eating a balanced diet with the right amounts of calcium and vitamin D, not smoking, and limiting alcohol) that are important, as well as medications available that not only fight bone loss but replace lost bone mass, and screenings for osteoporosis.

THEREFORE BE IT RESOLVED, the National Black Caucus of State Legislators (NBCSL) supports increase in funding and/or access to coverage for DEXA scan that tests bone density and  is critical to diagnosing osteoporosis when medically appropriate;

BE IT FURTHER RESOLVED, that the NBCSL supports education, awareness, screening, and prevention on bone health to inform and empower women and men to take charge of their bone health; 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 Unites 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.

• SPONSOR(S): Representative Vivian Flowers (AR) and Representative Ajay Pittman (OK)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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THE IMPORTANCE OF PRECISION MEDICINE AND BIOMARKER TESTING

WHEREAS, precision medicine, which is also called personalized health care or individualized medicine, is an evolving field in which health care providers use analysis of a patient’s biospecimen, known as biomarker testing, to determine which medical treatments will work best for each patient;

WHEREAS, by combining the data from biomarker testing with an individual’s medical history, circumstances and values, health care providers can direct a patient to targeted treatment, which benefits both patients and the overall health care system;

WHEREAS, the field of precision medicine has the potential to be transformative in ensuring the delivery of the right treatment to the right patient and the right time and to avoid treatment that may cause physical or financial toxicity;

WHEREAS, 60 percent of treatments in preclinical development rely on biomarker data;

WHEREAS, biomedicine and the understanding of the characteristics of a patient’s disease that informs precision medicine is evolving rapidly;

WHEREAS, health care providers are increasingly utilizing technologies, such as biomarker testing, that can help identify gene mutations, alterations, or protein expressions specific to individual patients;

WHEREAS, health outcomes are improved through the use of precision medicine, for example patients with certain types of lung cancer who received biomarker testing had a 28 percent reduction in mortality;

WHEREAS, oncology has been leading the way in precision medicine advancements, the tailoring of treatment to specific biomarkers is being explored in other diseases and conditions;

WHEREAS, collectively Blacks in the United States have the highest death rate and shortest survival of any racial or ethnic group for most cancers;

WHEREAS, without efforts to increase access to biomarker testing and precision medicine for groups that have been marginalized, disparities in cancer survival could increase;

WHEREAS, there are notable racial/ethnic, and socioeconomic disparities in access and utilization of biomarker testing, for example Black men have the highest rates of lung cancer of any racial group and eligible Black patients are less likely to receive biomarker testing compared to White patients and colorectal cancer patients who are older, Black, uninsured, or Medicaid-insured, are less likely to receive guideline-indicated biomarker testing;

WHEREAS, improving access to biomarker testing is important to advancing health outcomes, treatment, and health equity;

WHEREAS, The National Academy of Medicine considers biomarker tests to be “key to unlocking the promise” of precision medicine;

WHEREAS, biomarker testing is available for an ever-increasing range of conditions and diseases, but patient access to these tests is not keeping pace with the rate of innovation;

WHEREAS, a lack of awareness among providers and patients, a lack of common terminology, and deficient coverage policies by both public and private payers are preventing effective adoption and integration of biomarker testing into precision medicine particularly for diverse communities and in nonacademic health care settings;

WHEREAS, appropriate awareness and education about the ways biomarker testing can be used to support diagnosis, treatment, and monitoring of patients in a personalized way; and

WHEREAS, states can promote awareness, education and action related to improving access to biomarker testing.

THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators supports raising awareness, encouraging education, and improving understanding of the ways biomarker testing can be used to support diagnosis, treatment, and monitoring of patients in a personalized way and the importance of ensuring access to these advanced diagnostic technologies; 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 Unites 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.

• SPONSOR(S): Representative Vivian Flowers (AR) and Representative Ajay Pittman (OK)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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ADDRESSING OBESITY

WHEREAS, the National Black Caucus of State Legislators (NBCSL) has previous policy resolutions recognizing the importance of preventing and reducing obesity, such as AGR-13-15, “ADDRESSING THE OBESITY EPIDEMIC IN AMERICA,” HHS-11-19, “SUPPORTING INCREASED ACCESS TO QUALITY NUTRITION AND SUPPORT FOR INFANTS AND CHILDREN,” and HHS-10-11, “A RESOLUTION RECOGNIZING THE PREVALENCE OF EXCESS WEIGHT AND OBESITY WITHIN THE AFRICAN-AMERICAN COMMUNITY, AND ITS IMPACT ON DIABETES AND CARDIOVASCULAR DISEASE AND URGING INNOVATIVE AND IMPROVED SOLUTIONS”; and HHS-14-49 “INCREASING ACCESS TO OBESITY TREATMENT OPTIONS;”

WHEREAS, obesity is recognized as a disease by organizations that include the World Health Organization, the U.S. Food and Drug Administration (FDA), the National Institutes of Health (NIH), the Internal Revenue Service (IRS), the American Medical Association, the American Association of Clinical Endocrinologists, and the Endocrine Society;

WHEREAS, almost 72 percent of Americans are overweight or obese and certain demographic and socioeconomic groups, including African Americans, Hispanic Americans, and the impoverished are disproportionately affected by obesity;

WHEREAS, the U.S. Department of Health & Human Services Office of Minority Health reports that in 2018, African Americans were 1.3 times more likely to be obese than non-Hispanic Whites, and African American women were 50 percent more likely to be obese than non-Hispanic White women;

WHEREAS, COVID-19 has shined a light on the health inequities experienced by communities of color, as African Americans and Hispanics have been disproportionally affected by the virus;

WHEREAS, obesity has been shown to be the strongest predictor for COVID-19 and is not only associated with severity of disease but also may predispose patients to getting Covid-19;

WHEREAS, according to Science Magazine, hospitalized patients in the US found that of the 17,000 patients hospitalized, 29% were overweight and 48% had obesity;

WHEREAS, according to Science Magazine, obesity negatively influences health outcomes. A meta-analysis of peer-reviewed papers covering 399,000 patients found that people with obesity who contracted COVID-19 were 113% more likely than healthy people to be admitted to the hospital, 74% more likely to end up in the ICU, and 48% more likely to die;

WHEREAS, social determinants of health (SDH) that often impact communities of color also increase the chances that a person will be infected with the novel coronavirus;

WHEREAS, African Americans are more likely to hold jobs that are considered essential or cannot be done from home, and are more likely to be employed in the service industry (24%) than whites (16%), putting them at risk of exposure if they continue to work in those positions;

WHEREAS, inequities in access to and quality of care lead to poorer health overall and many chronic illnesses, such as diabetes and obesity, that influence their chances of getting COVID-19;

WHEREAS, characteristics of communities in which African Americans often reside may place them at greater risk for developing chronic illnesses, such as lack of affordable and healthy foods or safe places to play or exercise outdoors;

WHEREAS, the Food and Drug Department (FDA) has approved a number of pharmaceuticals as safe and effective for weight management and the treatment of obesity;

WHEREAS, community programs are also critical to addressing obesity in communities, to help those affected lose weight, and make long term healthy habits;

WHEREAS, progress in the development of lifestyle modification therapy, pharmacotherapy, and bariatric surgery has led to new options with improved patient outcomes;

WHEREAS, the Medicare program currently covers obesity screening and counseling and certain bariatric surgery procedures for morbidly obese beneficiaries, but the Medicare law prohibits Part D coverage of prescription drugs to treat obesity; and

WHEREAS, a small number of state Medicaid programs (currently about 16 states) provide some coverage for medications for chronic weight management.

THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL) recognizes that health inequities in communities of color have led to a disproportionate impact of COVID-19 and that states must address the high rates of obesity to improve the health of communities of color and prepare for the next public health epidemic;

BE IT FURTHER RESOLVED, that NBCSL calls on Congress to eliminate the barriers to coverage of proven FDA-approved anti-obesity medications in the Medicare Part D program;

BE IT FURTHER RESOLVED, that NBCSL legislators will work within their states to ensure that the full continuum of treatment options, that have been approved by FDA are available through Medicaid programs and state employee health plans;

BE IT FURTHER RESOLVED, that the NBCSL further urges additional resources from federal, state, and local governments to support community programs that provide long-term support for lifestyle changes that can reduce obesity and help people maintain their weight loss; 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.

• SPONSOR: Representative Ajay Pittman (OK)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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SUPPORTING RARE DISEASES

WHEREAS, the National Black Caucus of State Legislators (NBCSL) supports increased representation of the rare disease community in state government to ensure that legislation or regulations that impact people living with rare diseases, which are often chronic and debilitating, are well-informed;

WHEREAS, in the United States a rare disease is defined as an illness or condition that affects fewer than 200,000 people;

WHEREAS, an estimated 25 – 30 million Americans are affected by over 7,000 rare diseases, many of which are serious or life-threatening and almost half of which affect children;

WHEREAS, Congress passed the Orphan Drug Act of 1983 to successfully encourage investment in the development of drugs to treat rare conditions, as these conditions were previously underrepresented in medical research and drug development, however over 90 percent of rare diseases still lack an FDA-approved treatment;

WHEREAS, people living with rare diseases face significant barriers to care, including years-long journeys to diagnosis, limited treatment and coverage options, lack of medical specialists for their conditions, and the economic burdens of managing their disease;

WHEREAS, these challenges faced by the larger rare disease community exacerbate existing health disparities for Black Americans living with rare diseases, such as social determinants of health, underrepresentation in clinical research trials, and disparate access to affordable healthcare;

WHEREAS, due to the sheer number of rare diseases, it is challenging for elected officials and agencies to have a full understanding of all rare diseases;

WHEREAS, the NBCSL acknowledges that it is crucial for laws and regulations affecting those living with rare diseases to be developed with input from stakeholders who understand the unique diagnostic, treatment, and access challenges that rare disease patients and their families face;

WHEREAS, Rare Disease Advisory Councils (RDACs) are advisory bodies created through state legislation that provide representation for the rare disease community in state government, with council membership including patients, advocates, physicians, researchers, and other experts;

WHEREAS, RDACs are typically responsible for examining treatment and services provided to people living with rare diseases in a state, including obstacles to care, and presenting recommendations to state legislatures, health departments, and agencies to improve the health outcomes and quality of life of the rare disease community; and

WHEREAS, over 20 states have enacted RDACs since 2015, ensuring that laws and regulations that impact the rare disease community or state efforts to address barriers among this vulnerable population are carried out with the medical, scientific, and technical input of the councils.

THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL) recognizes the need for increased awareness, education, and research regarding rare diseases;

BE IT FURTHER RESOLVED, that the NBCSL maintains that the unique needs of the rare disease community, including the needs of Black Americans living with rare diseases, should be addressed in collaboration with rare disease stakeholders;

BE IT FURTHER RESOLVED, that the NBCSL supports the establishment and continued support of Rare Disease Advisory Councils in all 50 states; 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.

• SPONSOR: Representative Toni Rose (TX)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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MAKING PRESCRIPTION MEDICATION MORE AFFORDABLE

WHEREAS, the National Black Caucus of State Legislators (NBCSL) has an extensive history of help patients to afford prescription medication;

WHEREAS, some people with chronic conditions continue to face challenges affording their medication and overall health care;

WHEREAS, there are now insurance plans with a $7,000 deductible for individuals and $15,000 for families, and 1 in 5 have deductibles of more than $3,000 for individuals and $5,000 for families;

WHEREAS, in a recent survey by Kaiser Family Foundation, they found that half of all Americans with coverage either delayed or skipped medical or dental care because of the cost;

WHEREAS, for people under age 65 with commercial insurance, enrollment in high deductible health plans (HDHPs) has increased from 22.4% in 2009 to 46% in 2018;

WHEREAS, HDHPs require patients to incur the full cost of some prescription medications before their plan deductible is met, meaning they often pay the full retail price out-of-pocket (OOP) before they meet their deductible, and the health plan starts helping them pay for certain medicines;

WHEREAS, patients are not guaranteed to directly benefit from the rebates and discounts drug manufacturers provide to health plans and Pharmacy Benefit Managers (PBM) in the form of lower OOP costs at the pharmacy counter;

WHEREAS, when a health plan exempts health care services for certain services from the deductible, known as first dollar coverage, many OOP expenses for patients are eliminated or limited to a copay or coinsurance;

WHEREAS, when a patient’s OOP costs are lower and health care expenses are more consistent throughout the year, medicine adherence rates increase, resulting in better patient health outcomes; and

WHEREAS, the Internal Revenue Service (IRS) issued guidance in July of 2019 that includes medicines that HDHPs with a health savings account (HSA-HDHPs) may consider as preventive and exempt from the deductible (provide first dollar coverage for), which enables states to legislate or regulate certain aspects of HSA-HDHPs.

THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL) encourages state legislators to explore legislation that will help patients who are struggling to afford their medication like utilize patient assistance programs;

BE IT FURTHER RESOLVED, that the NBCSL legislators to research the fiscal impact of state regulated health plans providing first dollar coverage for medicines to treat chronic diseases; requiring state-regulated health plans and/or PBMs to pass through a majority of manufacturer rebates and discounts to patients at the pharmacy counter;

BE IT FURTHER RESOLVED, that the NBCSL also supports improving consumer choices to use the pharmacy of their choice when obtaining their medication, as a consumer should not be limited to a certain pharmacy;

BE IT FURTHER RESOLVED, that the NBCSL believes that high deductible plans should be limited, so that healthcare can truly be affordable for Americans; 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 Unites 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.

• SPONSOR: Representative Billy Mitchell (GA)
  
• Committee of Jurisdiction: Health and Human Services (HHS) Policy Committee
  
• Ratified in Plenary Session: December 2, 2021
  
• Ratification certified by: Representative Billy Mitchell (GA), NBCSL President

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