Policy Resolution HHS-15-36

WHEREAS, Sarcoidosis is a non-contagious systemic disease of unknown origin; it is commonly diagnosed with the detection of inflamed, microscopic growths called granulomas that grow and often affect the lungs, skin, eyes, and nervous system;

WHEREAS, Sarcoidosis can affect any organ of the body and more than one organ at any given time;

WHEREAS, the inflammation of vital organs may cause seizures, blindness, disfiguring lesions, and heart failure;

WHEREAS, famous people who have suffered from Sarcoidosis include NBC sportscaster Darrian Chapman, Hall of Fame athletes Bill Russell and Reggie White, and gospel singer Mahalia Jackson, among many other celebrities who have or have had Sarcoidosis;

WHEREAS, comedian and actor Bernie Mac passed away a result of Sarcoidosis in 2008, and in his memory, his wife Rhonda McCullough created the Bernie Foundation to bring more awareness to this poorly understood disease;

WHEREAS, many individuals stricken with Sarcoidosis eventually develop a serious disability or a potentially fatal condition;

WHEREAS, Sarcoidosis was once thought to be an uncommon condition but is now known to affect tens of thousands of people throughout the United States;

WHEREAS, African Americans disproportionately bear the burden of Sarcoidosis, since according to the American Lung Association, the age-adjusted incidence rate for African Americans is over three times that of Caucasians, at 35.5 versus 10.5 cases per 100,000 population;

WHEREAS, according to the American Lung Association, Sarcoidosis is also more likely to be spread throughout the body in African Americans, who show a higher frequency of ophthalmological (relating to the eyes), cutaneous (relating to the skin), hepatic (related to the liver), and lymphatic symptoms than Caucasians, contributing to a mortality rate due to Sarcoidosis for African Americans that is 17 times that of Caucasians;

WHEREAS, according to the Cleveland Clinic, African Americans are at 4 to 17 times greater risk for suffering from Sarcoidosis than Caucasians;

WHEREAS, many people with Sarcoidosis have no symptoms, making it difficult to measure how many people have the condition;

WHEREAS, Sarcoidosis is a disease that affects Americans nationwide and people around the world, yet its causes and potential treatments remain a mystery;

WHEREAS, skin-related symptoms of this chronic, multi-systemic disease were first recognized more than 100 years ago, but the effects of the disease on other organs were not observed until recently;

WHEREAS, Sarcoidosis was the chief diagnosis of the death of fluorescent light bulb workers in Salem, Massachusetts in the 1940s;

WHEREAS, Sarcoidosis was the first diagnosis for an overwhelming majority of rescue workers present at the World Trade Center on September 11, 2001;

WHEREAS, the goal will only be achieved through joint efforts to empower patients, providers, community health centers, and health systems, to provide accessible, coordinated, quality of life services;

WHEREAS, today, researchers are still trying to learn more about the causes, cures, and overall nature of Sarcoidosis;

WHEREAS, with treatment, many people recover from Sarcoidosis although it can take several years;

WHEREAS, the American Lung Association, the National Sarcoidosis Society, and the National Sarcoidosis Foundation have actively advocated for more research to better understand how environmental and occupational exposures may increase the risk of Sarcoidosis; and

WHEREAS, Congress has recognized the disease and designated the month of April as Sarcoidosis Awareness Month, a month with worldwide events to increase public awareness of the need to support individuals with Sarcoidosis, educate others on the environmental and occupational issues associated with Sarcoidosis, and educate medical and professionals who care for individuals with Sarcoidosis.

THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL) fully supports April as Sarcoidosis Awareness Month and encourages the federal government, all states, and territories to show their support of the goals and ideals of National Sarcoidosis Awareness Month;

BE IT FURTHER RESOLVED, that NBCSL recognizes Sarcoidosis’ prominent yet hidden role in America’s workforce history and encourage further examination of the specific occupations in which Sarcoidosis is disproportionately represented;

BE IT FURTHER RESOLVED, that NBCSL supports activities that will increase education and outreach to all populations, especially to those who are most impacted by Sarcoidosis disparities;

BE IT FURTHER RESOLVED, that NBCSL supports state policy proposals that will help to correctly diagnose, prevent, and cure Sarcoidosis, including the following to:

• Establish state-wide Sarcoidosis educational awareness, diagnosis, services, and media campaign programs where ones do not exist;
• Increase community awareness of Sarcoidosis and the importance of getting diagnosed and improved access to services, through partnerships with hospitals, community health centers, and other organizations in the health care communities;
• Broaden access to health care coverage and insurance programs such as Medicare, and Medicaid expansion programs; and
• Reduce cost and access barriers to screening and treatment services;

BE IT FURTHER RESOLVED, that NBCSL urges Congress to disburse more research funding relative to Sarcoidosis and the importance of supporting individuals with the disease and raising its awareness;

BE IT FURTHER RESOLVED, that NBCSL urges the Congress to increase funding for the Centers for Disease Control and Prevention, with the express purpose of increasing their focus on Sarcoidosis; 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 as appropriate.

• SPONSORS: Senator Donne Trotter (IL) and Representative Regina Barrow (LA)
• Committee of Jurisdiction: Health and Human Services Policy Committee
• Certified by Committee Chair: Senator Willie Simmons (MS)
• Ratified in Plenary Session: Ratification Date is December 12, 2014
• Ratification is certified by: Representative Joe Armstrong (TN), President