Doctor's tweets for help are signs of larger problem

"I need to speak to someone about a denial of a PA [prior authorization]. You are changing someone’s long-term medicine without even speaking to their physician. I need a person not a fax number ASAP. Thanks.”

That was sickle cell specialist Julie Kanter’s first message on Twitter to an insurance company that was not allowing her patient to fill a prescription for opioids and was instead requiring the woman to shift to a newer, abuse-deterring version of the medication that Kanter says wasn’t even available in local pharmacies yet.

Her patient was in trouble. Without the refill, she’d not only be in pain but also withdrawal.

An hour after Kanter’s first tweet came a second one, again addressed to the insurance company. It showed there had been progress but no resolution. 

“Just to be clear, thank you for calling but I need to SPEAK to the person deciding to change my patient’s long-term medicine. I don’t need another fax or more paperwork. I need a human,” the doctor typed on Twitter.

It was an increasingly familiar quest for Kanter, who directs sickle cell research at the Medical University of South Carolina, treats patients and leads a statewide sickle cell disease network.

Sickle cell disease is a group of blood disorders that can distort red blood cells into a sickle shape. Between 70,000 and 80,000 Americans suffer from it. The disease can cause shortness of breath, tiredness, growth delays, jaundice, pain when the sickled cells get stuck in small blood vessels, organ damage, high blood pressure and heart failure.

Even though life expectancy for people with sickle cell disease has improved dramatically in recent decades, Kanter said in an interview that there are still a lot of people suffering from it. 

“In sickle cell, we haven’t had many disease-modifying medications. While not optimal, opioids are the only thing that have allowed patients to get relief and also, in many circumstances, to function. I have nurses that I care for and lawyers that I care for and other professionals who are on varying doses of chronic opioids due to the painful complications of sickle cell disease, including disabling bone infarcts.”

However, as important as opioids can be to some of her patients, Kanter supports the national push to reduce opioid use. She knows the numbers. Every day, about 115 Americans die from an overdose of prescription opioids, heroin and/or fentanyl. 

“I understand the concern. After you have your wisdom teeth extracted, nobody should give you 30 days of opioids,” she said. And some doctors have to do a better job of checking the electronic database that tracks controlled substance prescriptions to make sure patients aren’t getting the same medications from multiple sources, she said.

“But there are people who do rely on opioid containing medications. If you asked me to take an extra two-hour course on safely prescribing opioids, I’d do it to prove my worth. Or if you said, ‘If you’re going to be in this category of doctor we’re doing to monitor you closer,’ that would be fine.” 

She said there has been some discussion of insurance companies moving to ease restrictions for patients in certain categories such as sickle cell disease and cancer. “But that hasn’t happened yet. I think that would be useful, or at least allow some leeway in those people.”

As for the situation she tweeted about, seven hours after her second Tweet, she still hadn’t heard anything from the insurance company. So Kanter launched a third message on the social media site. “You have denied a person’s medication that has improved her care (for 2yrs) without speaking to her doctor. This is wrong!”

Finally, she tweeted: “[Insurance company] this is ridiculous. This patient has a part D, has been on the medication for more than two years and someone without an MD wants to change it. [You] cannot connect me to a live person. Patient out of meds.”

This story did have a relatively happy ending. “We managed to obtain medication approval before the patient suffered any consequences," Kanter said.

Kanter hopes that by talking about the situation, she can make more people aware of the problem. “I have patients who have filled the same medicine, only from me, for the last year. That should be approved. It shouldn’t be a question.”