How Opioid Laws Hurt Sickle Cell Disease Patients

By Kelly Burch 07/27/17

With opioid regulations tightening, patients with sickle cell are having a tough time getting pain meds from their doctors. 

woman talking to doctor

Many opioid addictions start when patients take legal prescription pills, so it’s unsurprising that laws around the country are making it harder for doctors to write prescriptions for powerful opioids, particularly for the long term. However, patients with chronic painincluding the 100,000 Americans with sickle cell anemiasay that the opioid restrictions are affecting their quality of life. 

“These people are not addicted to these drugs,” Judy Anderson, the executive director of the Sickle Cell Anemia Association of Hampton Roads, an advocacy group in southeastern Virginia for people suffering from the disease, told The Philadelphia Tribune. “They are dependent on them because of the pain they are experiencing throughout their lives.”

The disease affects how red blood cells carry oxygen through the body and can cause severe pain. Because of this, many people with the disease are given opioid painkillers from a young age. 

Last year, however, a Johns Hopkins study found that opioids may not improve outcomes for people with sickle cell anemia. 

“We need to be careful and skeptical about giving increasing doses of opioids to patients with sickle cell disease who are in chronic pain if it isn’t effective,” study leader C. Patrick Carroll, director of psychiatric services for the Johns Hopkins Sickle Cell Center for Adults, said at the time. “Too little is known about the effects of long-term opioid management of chronic pain.” 

“We need to better understand how long-term opioid use affects pain sensitization and determine if certain people are more sensitive to these effects so we can prescribe the best treatment option for each individual patient,” Carroll said. “We also need to learn more about how sickle cell disease may sensitize the nervous system.”

However, Judy Anderson says that while researchers try to discover how best to manage pain for sickle cell patients, and how to get doctors to adhere to stricter prescribing practices, people are suffering. 

“One lady who called the office Monday, July 10th, told me she took her last pain pill the previous Friday,” said Anderson. “Her doctor is reviewing her case and has not written her a new prescription. Unable to get her pain meds, I am sure she will end up in a hospital, because she went to the emergency room to have her pain treated.”

Anderson said that doctors have been telling sickle cell patients to buy 880 milligrams Tylenol or other over-the-counter painkillers to thwart their discomfort.

“But that is just like taking a baby aspirin,” she said. “It’s a band aid. It does nothing for these people.”

However, there may soon be hope. A few weeks ago, the FDA approved Endari, the first new drug to treat sickle cell anemia in nearly 20 years. The medication is approved to “reduce severe complications associated with the blood disorder,” which in turn can cut down on pain.

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Kelly Burch writes about addiction and mental health issues, particularly as they affect families. Follow her on TwitterFacebook, and LinkedIn.