Fighting Diabetes and Sickle Cell Disease in NJ with Information

Lilo H. Stainton | October 7, 2016 | Health Care
Lawmakers say Medicaid should cover cost of diabetes education and management, also want state to set up sickle cell database

Nurse, Patient
Diabetes kills some 2,000 New Jersey residents each year, making it the sixth leading cause of death here, bringing pain and suffering to hundreds of thousands more, and driving up the overall cost of healthcare.

A group of lawmakers hopes to shift this pattern with a plan to ensure that more diabetes patients know about the disease and how to better manage its symptoms.

In a measure (A-2993) approved by an Assembly panel on Thursday, the lawmakers call for Medicaid to cover the cost of diabetes education and management for people who have the disease. The plan would pay for treatments and services that meet national standards and also for appropriate medical devices. (Most private insurance plans cover some or all of these expenses.)

The Assembly health committee also passed a proposal to create a sickle cell trait registry that could help reduce the incidence of sickle cell disease. This genetic disease is a blood disorder that impacts nearly 8 percent of African-Americans. It is caused by a certain combination of genes; its symptoms include severe, sudden and debilitating pain and, over time, organ damage.

That measure (A-2995) would require the state health department to establish a confidential database to track babies who test positive for sickle cell trait at birth and ensure their parents know the potential risks. Many of those carrying the gene don’t know they have it and lawmakers believe they should have this information when planning a family.

[related]Both proposals reflect a growing interest in helping patients stay healthy and better manage chronic diseases, elements that are also part of the Department of Health’s public health goals. Chronic diseases — like diabetes — account for 70 percent of deaths nationwide, according to the DOH, and, while impacted by genetics, they often reflect people’s lifestyle choices. (Sickle cell is a genetic condition.)

“Diabetes can wreak havoc on a person’s body, but with healthy eating, regular physical activity and proper medication, it can be managed. That is why education about how to treat it is key,” said Deputy Assembly Speaker Benjie Wimberly (D-Passaic), a sponsor of A-2993, along with Assemblyman Herbert Conaway, (D-Burlington), and Assemblywomen Nancy Pinkin, (D-Middlesex) and Shavonda Sumter (D-Passaic.)

An estimated 700,000 New Jersey residents have diabetes — including nearly 90,000 on Medicaid — and Sumter said a recent report suggested that number could double by 2025. Nationwide, more than 29 million Americans suffer from the disease, a blood disorder that causes difficulty processing sugar and can lead to fatigue, blurry vision and, if untreated, circulatory problems and amputations.

“The financial costs and suffering caused by diabetes are increasing rapidly in New Jersey and nationwide,” said Conaway, who chairs the health committee panel that approved A-2993.

The proposal would pay specific healthcare providers to teach patients how to monitor their blood sugar; it would fund nutrition counseling or other wellness programs recommended by healthcare professionals; and pay for blood-sugar monitors and supplies, among other things. In some cases, it would also cover those diagnosed with pre-diabetes, a condition that puts people at risk of developing the full-blown disease without intervention.

The treatments would need to meet the standards set by a national diabetes program run by the federal Centers for Disease Control and Prevention. A Senate version of the bill awaits a hearing.

The bill (A-2995) addressing sickle cell disease would require the Department of Health to create a registry, which would serve to make individuals aware of their sickle cell trait status. The state already oversees several disease registries, including lists of cancer and birth defects, and closely tracks communicable diseases like measles and whooping cough.

According to the CDC, an estimated 3 million Americans are sickle cell carriers of whom 100,000 are New Jersey residents — but not all have the disease or even know they carry the gene. Two carriers can pass the genes to their baby; a child with two sickle-cell genes will have sickle cell anemia.

Newborns are already screened for the sickle cell trait, but the legislation would require that the state be notified of a positive test, so it can be registered in the database. It would also require doctors to discuss the outcome with parents, encourage them to be tested, and inform them of the risks involved in having additional children.

“Individuals with sickle cell trait can make the best choices about their health only if they know that they have the trait,” said Conaway, who sponsored the bill along with Wimberly and Assemblyman Jamel Holley, (D-Union.) “This bill will help empower those who carry sickle cell trait to make informed decisions.”

A Senate version of the sickle cell bill awaits a hearing.