Less than two weeks after Estonia's Chancellor of Justice declared it unconstitutional that ADHD drugs aren't available to all adults at the same discount, dozens of people's prescriptions were suddenly being rung up for cheap. The Estonian Health Insurance Fund (EHIF) is blaming a technical glitch, but many are hoping the change will stay.
Karoliina Elizabeth Pettai was diagnosed with ADHD as an adult. The first time she had her Medikinet XL 20mg prescription filled, she paid the full, undiscounted price of around €29 for the box. In mid-July, she called her family doctor to request a refill, and noticed when checking the online Patient Portal that this prescription had been issued with a 90 percent discount rate applied.
"I thought this was some sort of error and that I'd still have to pay the full price at the pharmacy, but when I got there, I paid less than €3 for it," Pettai told ERR News on Friday.
Then, earlier this week, Pettai went to the psychiatrist, where she was prescribed Concerta 36mg instead — another drug with the same active ingredient as Medikinet, methylphenidate, but a different formula and release profile — and told that it would cost €80. Shocked by the price, she mentioned she had recently been able to buy Medikinet at a discount rate, and added that she'd read in an Estonian ADHD support group on Facebook that several other people who previously didn't qualify had suddenly been able to buy their meds at a discount recently as well, but the prescribing psychiatrist made some calls and confirmed that no, she was not in fact eligible for a discount.
Bracing for the worst, Pettai then went to the pharmacy. To her surprise and confusion, her Concerta prescription, which should have been €52, nonetheless rang up at just €11.
Overjoyed that she was able to buy her new medication at a discount after all, she sent a photo of the receipt to her psychiatrist, but the psychiatrist responded that they'd been in touch with Getter Hark, chief specialist at EHIF's Pharmaceuticals and Medical Devices Department, who confirmed that Pettai's prescription being dispensed to her at a discount had been a mistake.
"Yesterday I was really happy to see the discount again, but after talking to [my psychiatrist] again, I'm now even more confused and sad," she said. "This had given me hope, as I'd save more money, but now I don't know what to think anymore."
Pettai isn't the only one. Since July 18, who has recently gotten what ADHD medications at a discount has been a lively topic of discussion in the ADHD Facebook support group, and commenters have wondered if it's possible that the Ministry of Social Affairs regulation governing what drugs are available at a discount for whom had already been amended.
This did seem dubious, considering the chancellor of justice had only just recently issued her six-page statement regarding the unconstitutionality of only those adults diagnosed with ADHD prior to turning 20 being able to buy their ADHD drugs at a discounted rate. Besides, the chancellor had given the ministry a deadline of August 8 to resolve the discriminatory discrepancy.
On July 19, Olari Koppel, director of the Office of the Chancellor of Justice, confirmed to ERR News that their office indeed knew nothing about any changes, noting that EHIF had not yet responded to the justice chancellor's letter.
EHIF official: This is just a coincidence
That same day, EHIF told ERR News that people suddenly being able to buy their ADHD meds at a discount was actually due to a technical glitch.
"No substantive changes to discounting ADHD drugs have been introduced yet," EHIF spokesperson Sander Rajamäe said. "Some adult patients who were untreated as children may currently have been able to get discounts on these drugs due to a general technical error which we are working on resolving. Pharmacies are aware of the issue and they have been recommended to verify discount rates issued by the prescription center and adjust them in cases where they do not correspond with what is listed on the issued prescription."
This tracks with Hark's emailed response to a query by Pettai as well, where the EHIF specialist explained that the prescription center is applying discounts to ADHD drugs not due to any changes in conditions, but rather due to a technical error.
Hark did note, however, that the Estonian Psychiatric Association (EPL) had submitted an application on July 8 for several ADHD medications to be included on the list of prescription drugs eligible for discounts for all, and that this application was being processed under routine procedure. "The current situation is merely a coincidence that has no correlation," she added.
According to Rajamäe, EPL's application passed initial review by the EHIF and had been forwarded to Estonia's State Agency of Medicines on July 11. "Whether the 75 percent discount rate on ATH drugs will be extended to all patients in the future depends on the State Agency of Medicines and EHIF's assessments and the recommendation of the Medicinal Products Committee," he explained.
Verification of discount eligibility under the old rules being stepped up on the pharmacy end should have "eliminated this possibility by now," Rajamäe added, but well over a week later, people are still trading stories on social media about being able to buy their medications for cheap.
Ly Rootslane, board member at the Estonian Pharmacies Association (EPAL), also told ERR News last week that "When a medication is issued, the digital prescription center's software automatically verifies whether the discount rate is valid; the pharmacist doesn't change it."
'I hope this glitch is made permanent'
How long this apparent stroke of luck at the confluence of several factors may last is unclear, but many, including people who take the ADHD drugs eligible for discounts themselves, are hopeful the change is here to stay.
"The unexpected expansion of discounts due to a glitch in EHIF's system raised many people's hopes that EHIF had taken decisive action in light of the justice chancellor's position and prioritized patients' constitutional rights," Ott Oja, director of the Estonian Coalition for Mental Health and Well-being (VATEK) said Friday. "It was disappointing to learn that this was a system error and that EHIF is working to restore the [previous] discriminatory situation and that we'll likely have to wait another several months for an actual change."
Triin Kliss, a founding member of the nonprofit ADHD Estonia, told ERR News that she typically pays €64-88 per month for her ADHD meds, but was now able to buy them for just €23.
After returning to Estonia from from abroad, Maria Palgunov was happily surprised by the same discount price as well.
"I was diagnosed [with ADHD] and received my first medications in South Korea," she explained. On July 12, she saw a psychiatrist in Estonia and was prescribed Medikinet here for the first time, where she didn't qualify for a discounted rate. "I was willing to pay nearly €100 for my prescription. On July 18, I went to the pharmacy as I was running out of the Medikinet I had bought abroad, and surprise — instead of €88.44, I paid €23.98."
Palgunov said that even in South Korea, which she described as very conservative in regards to mental health, she paid even less for her meds than that — somewhere around €5 for a pack of Medikinet 30mg.
"When I returned to Estonia, I was very surprised that our Health Insurance Fund doesn't pay for anything," she said. "Private health insurance also only covers just €50 in prescription drugs, and as far as I know that doesn't even apply to psychiatric medications. I hope this discount glitch is made permanent."
Prescription meds or food on the table
As gas prices remain high, another winter of high energy prices looms and Estonia clocks the fastest annual inflation rate in the EU for the third month in a row — 22.7 percent in July according to a Eurostat flash estimate published Friday — those whose quality of life depends on expensive medications are especially vulnerable.
For some, whether or not they can buy their ADHD medications at a discounted rate can mean the difference between treating their ADHD or not — a reality even Chancellor of Justice Ülle Madise referred to in her letter to the Ministry of Social Affairs earlier this month.
"I was only recently diagnosed with ADHD," Kristi Vahtler said. "All my life I've wondered why I'm weird like this and it was only as adult that I was finally able to reframe all my struggles as challenges and make my peace with all of it. I even started loving myself just the way I am."
Nonetheless, the past few years have been very challenging for Vahtler. The end of a ten-year relationship left her and her young child struggling financially, and to this day she has to count every penny just to get by.
Vahtler found a job she loved, but following a series of warnings for mistakes at work, her career was hanging on by a thread — which is why her hands shook as she went to the pharmacy recently to get her first ever Medikinet prescription filled.
"I'd heard that these medications were expensive, and to be honest, the entire situation was absolutely depressing for me, considering the situation I'm in," the single mother said. On one hand, this was the very last of her money; on the other, she was terrified of losing her job. "This was my last hope."
Then the pharmacist rang up her prescription, and she did a double take. "My medication cost €8-something and I was absolutely over the moon," she recalled. "I was so grateful, and I felt that my life was going to change right then and there. And so it did."
Vahtler said that she is a completely different person when medicated — in a good way. "I can write instructions for three hours straight without a break, whereas before even just half an hour was tough, and ten things at once were popping up in my head," she described.
After a lifetime of struggles, many adults who finally get diagnosed and start taking ADHD medications report massive differences at work, at school as well as in their personal lives, often describing their experience as similar to one finally getting much-needed getting glasses for the first time.
"I can't imagine my life without Medikinet anymore," she said. "But it'll be very sad if I discover at some point that I can't buy it anymore or else I can't put food on the table for my child or gas in the car to get my child to kindergarten and myself to work, because logistically I have no other choice but to drive."
Like many, Vahtler sincerely hopes that this erroneous discount is made permanent. "Because otherwise my quality of life will improve on one hand and deteriorate on the other," she said. "Maybe they'll understand that this shouldn't be an error, but normalcy."
Editor: Aili Vahtla