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Senate Looks to Mandate Autoimmune Registry

The Health Department will have a mandate to create a registry of autoimmune diseases to help patients and to accumulate and track data over time, if a bill sent for a final Senate vote Thursday is enacted into law.

Bill 31-008 was sponsored by Sen. Sammuel Sanes and it lists 158 conditions to track, from Acute Disseminated Encephalomyelitis through Vitiligo, and says it should also include any others not listed.

Sen. Nereida "Nellie" Rivera-O’Reilly said the bill was well received when it was heard by the Health, Hospitals and Human Services Committee, recounting that several individuals suffering with autoimmune diseases like multiple sclerosis, on the lack of available local data and the need for systematic collection of information in a single place.

At the initial hearing in June, officials from Human Services, the Health Department and the Caribbean Exploratory Research Center of Excellence on Health Disparities at the University of the Virgin Islands all presented written or verbal testimony supporting the creation of a registry. But they also raised concerns about funding and about the hurdles created by a lack of a comprehensive digital medical records system in the territory.

"As we speak, we are unable to supply and staff the cancer registry so vehemently demanded by all quarters because of lack of funds," Health Department Medical Director Dr. Marc Jerome said in June. He later said he supported the bill and that the cancer registry, while struggling, is up and running. The Legislature first mandated the cancer registry in 1999. (See Related Links below)

Sanes said at that June hearing that "a funding source, when it comes to people’s lives, should never be an issue," Sanes said when the bill was first heard in committee. He suggested creative thinking could find a way and compared the issue to recent legislative efforts to create a free registry of defibrillators in the territory that can be downloaded as a smartphone app, free of charge. "I will help finding a funding source. But the fact is this can affect any of us," he said in June.

The Rules Committee approved an amendment addressing concerns about patient privacy and then sent it on for a final vote on the Senate floor without opposition.

"It is going to be a very helpful factor in saving lives, that I can say. Thank you, thank you, thank you," Sanes said after the vote.

The Rules Committee also sent forward four of Gov. Kenneth Mapp’s nominees for various positions.

It forwarded the nomination of acting Lottery Director Juan Figueroa Melendez to fill the post on a more permanent basis. A St. Croix native, Melendez attended the Puerto Rico Conservatory of Music, then served in the U.S. Air Force and played in the U.S. Air Force bands. He returned to St. Croix in 1983, working as a general manager at a local Pueblo supermarket and playing in the V.I. National Guard band as an oboist.

He served in VING for 22 years and retired as a major. From 2005 through 2009 he served as chief of staff for Sen. Juan Figueroa-Serville. From 2009 to present he has worked for the Disability Rights Center of the Virgin Islands as an advocate, until appointed by Gov. Kenneth Mapp to head the V.I. Lottery.

The committee also sent on the nominations of Dr. Laura Lee Bailey and Dr. Bethany Bradford as members to the Board of Examiners of the Practice of Veterinarian Medicine, and Vera Falu to serve on the Gov. Juan F. Luis Hospital governing board.

Bailey, who has been a licensed veterinarian on St. Croix for the last five years, said if she is approved to serve, she would like to see the territory allow visiting veterinarians to do short-term spay and neuter events, saying the board is allowed to grant that under existing law, but some veterinarians are wrongly concerned they could face competition.

She also advocated the territory write its own licensing exam for new veterinarians instead of using the North American Veterinarian Licensing Examination and work on updating and modernizing the Animal Practice Act.

Bailey said there are dozens of veterinarians who are willing to fly down for a week or two and perform hundreds of spays and neuters of cats and dogs for free.
Bradford, who has been practicing veterinarian medicine since 1997, with most of her work experience in the government, is now the director of veterinary service for the Department of Agriculture.

Falu, a native of Puerto Rico, has held numerous high level positions in the V.I. government, primarily relating to health care. She has a bachelor’s degree in nutrition and administration from the University of Puerto Rico and completed a hospital administration internship at the Rio Piedras Medical Sciences Campus of UPR.

Falu moved to S. Croix in 1973 and became chief dietitian at Charles Harwood Memorial Hospital in 1974, eventually rising through the ranks to become a special assistant to the chief executive officer. In 1995, she was appointed commissioner of Licensing and Consumer Affairs. She retired from the Grigg Home in 2011.

Voting yes on each bill and nomination were Sens. Jean Forde, Novelle Francis, Justin Harrigan, Neville James, Rivera-O’Reilly and Kenneth Gittens. Sen. Janette Millin Young was absent. The bill and the nominees will next be heard for a final vote on the Senate floor at its next session.

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