For Jen Forbes, getting the right treatment for her ADHD is a matter of safety.
"My profession is maintenance," the Lynn native said. "I do a lot of electrical wiring, plumbing, that kind of stuff. And if I can't keep focus, that's a dangerous situation, to say the least. You don't want to be wiring someone's business when you when you can't stay focused."
But a national shortage has left Forbes without the generic ADHD drug that gives her that focus.
"I have called at least 30 pharmacies this past month, and it's impossible to get," Forbes said. "I ended up having to pay $670 for the brand name because everybody seems to have the brand name, but the generic is nowhere to be found."
Her insurance covers the generic version of the drug, but not the brand-name Adderall. Forbes said she's hoping not to have to pick up that full tab again when she runs out next month.
"I'm just really hoping that they're going to be back on track by that point," she said. "I don't know what the holdup is."
The holdup began over the summer with a labor shortage at the pharmaceutical company that makes the name-brand version of Adderall. While that supply appears to have been largely restored, the added demand that was placed on generic versions of the drug have led to severe shortages, said Dr. Tim Wilens, chief of the division of child and adolescent psychiatry at Massachusetts General Hospital
"The problem is other companies around that might have been able to produce more are sort of locked because of a quota system [that limits production]," Wilens said. "That seems to be better now across the manufacturing. It just it's going to take a while for that then to be reflected in the distribution."
In the meantime, Wilens said, his patients are calling pharmacies, desperately trying to fill prescriptions.
"The pharmacists are burdened, trying to look and say, 'Oh, we have 60 tablets of this available.' The patient says, 'Please, please, please hold this.' Now the patient has to call the physician's office back and say, 'Can you resend this controlled prescription now to this pharmacy?' For for people like myself, the physicians, you know, it creates a burden to your system," Wilens said.
By the time patients get the prescription transferred and arrive to pick it up, Wilens said, the drugs may have been given to another desperate patient.
Some patients can switch to a different prescription for the time being, Wilens said. But the transition isn't easy, since the drugs don't all medicate in the same way. They can also have varying side effects.
''We find the right medicine that lasts the right amount of time," Wilens said. "People with ADHD do much better when they have structure. This disrupts the structure."
"I have patients calling me saying, 'What should I do?'" said Dr. Edward Hallowell, who runs four centersthat treat patients with ADHD and related conditions, including one location in Sudbury. "And I can't tell them anything other than call as many pharmacies as you can until you find one. It's like they're prospecting for gold out there."
Going without ADHD medication can significantly impact patients' lives, said Hallowell, who has ADHD himself.
"Imagine you couldn't find your eyeglasses," Hallowell said. "You know, that's more than an inconvenience, depending upon how severely nearsighted you are. Well, these meds operate for people much in the way that eyeglasses do. They help you focus. And if you can't find your eyeglasses, you're walking around all day, you know, in a pretty bad mood bumping into things... If these meds work for you, you really don't want to do without them. It's not something that's going to kill you by any means, but it does reduce your effectiveness not only professionally, but in your your personal life as well."
Among Hallowell's patients is Jen Forbes, who resorted to paying nearly $700 out-of-pocket for name-branded Adderall that her private insurance won't cover.
Given the generic shortages, insurance companies should be compelled by the state to cover name-brand Adderall, said Dr. Tim Wilens of MGH.
"I certainly understand that insurance companies are under a lot of pressure to ensure that people are using the proper medicines, to be sure that that medicine is being used appropriately. But more importantly, you know, let's be honest, you have to be careful about cost. You know, somebody's got to be charged. Things get expensive," Wilens conceded. "The flip side of that is, if there is nothing available and that is the only option, you know, I certainly would argue that the insurer should pick up that."
An official with the state's Division of Insurance said the division hasn't received complaints regarding a consumer’s inability to obtain their medication, nor has it issued any guidance for health carriers on covering these medications on an emergency basis. The division is encouraging patients having a hard time obtaining ADHD medication tofile a complaintwith the Division’s Consumer Service Unit.
