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Sickle cell advocate wins fight for high-dose opioids

Jeremy Lazarus | 7/8/2018, 12:31 p.m.
George H. Carter appears to have won his fight to ensure that people like himself who suffer from sickle cell ...
George H. Carter

George H. Carter appears to have won his fight to ensure that people like himself who suffer from sickle cell disease can get the high dosages of opioids needed to control the excruciating pain.

On June 15, Gov. Ralph S. Northam approved a regulation to make a change that Mr. Carter pushed as administrator and chief lobbyist for the nonprofit Sickle Cell – Virginia, the umbrella statewide organization with chapters in Richmond and other localities.

The regulation change will allow physicians to provide those with the niche genetic blood disease with far higher levels of opioids without being forced to justify the treatment as is now required when such potentially addictive drugs are prescribed to those in pain.

That would be a big change for the estimated 4,000 Virginians, mostly African-Americans, who live with sickle cell, which creates red blood cells that are rigid, less durable and crescent-shaped and can block blood vessels and the flow of oxygen, creating painful episodes.

The governor’s action endorses the state Board of Medicine’s 12-6 vote in February to add sickle cell disease to the short list of exemptions from the tough, 15-month-old emergency regulations governing the prescribing of opioids.

Prior to the change, the only exemptions from the regulations were for people being treated for cancer or those diagnosed with terminal conditions and in hospice or palliative care.

The change is now subject to public comment along with the rest of the final regulations regarding opioid prescription, according to William Harp, executive director of the state Board of Medicine. “If the regulations are not suspended by comment, then they will become effective Wednesday, Aug. 8,” Mr. Harp stated.

Mr. Carter, a retired City of Richmond senior procurement officer, cannot wait for that to happen.

The 72-year-old Richmond area resident has needed time and patience to get sickle cell disease recognized this way.

He had no success at the General Assembly, he said. Members of the Virginia Legislative Black Caucus refused to champion the cause of sickle cell sufferers. Mr. Carter said that one delegate even refused to meet with him about the issue.

The Free Press also did not receive return calls or emails from two Caucus members, Delegate Lashrecse Aird of Petersburg and Delegate Marcia Price of Newport News, who serve on the committee that addresses opioids.

Mr. Carter refused to give up and took his case to the state Board of Medicine, along with other advocates from Sickle Cell-Virginia and from supportive physicians.

“If you haven’t experienced the pain, you just cannot imagine what it is like,” said Mr. Carter, who said he endures episodes at least two or three times a year.

Sickle cell disease pain is widely considered unique because it often begins in the first year of life and continues through adulthood, often growing in intensity as people age, according to researchers.

Some patients describe sickle cell pain as the worst pain one can suffer — far worse than postoperative pain and at least as intense as cancer pain. It is a leading cause of emergency room visits and hospitalizations among sickle cell patients, and the frequency of admissions for pain is a strong predictor of premature death, according to researchers.