Total fear: Local families describe the struggle to find needed medicine as the shortage reached its peak

During the first three months of 2024, there were 323 active drug shortages, according to the American Society of Health System Pharmacists.

Before 2022, the last high was in 2014 with 301 active drug shortages. This is also the highest record the trade organization has seen since it began tracking drug shortages in 2001.

Essential drugs are among those in active shortage, including insulin, specific drugs for type 2 diabetes, standard chemotherapy, pain and sedation drugs, and ADHD drugs, according to the American Society of of Pharmacists of the Health System.

Doctors struggle to find supplies

Doctors are also trying to help their patients overcome this shortage, which has led to increased anxiety and worry for their patients.

It has consumed our days, said Dr. Miguel Parilo of Premier Healths’ Bull Family Diabetes Center in Oakwood on finding diabetes medications in general.

Parilo may have 15 to 20 patients a day who need help coming up with an alternative plan if they can’t access their regular medication.

Some patients may switch to an alternative, while others may have a harder time finding a drug that is available, works for them, and is covered by their insurance or affordable.

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One of the medications Parilos’ patients have had difficulty finding is Humalog, or insulin lispro injection, specifically in vials, which are generally what patients use when using an insulin pump, he said.

Drug company Eli Lilly discontinued its 3 millimeter vial of Humalog, according to the FDA. The drug company warned earlier this year that its 10 millimeter alternative would likely be in short supply until April because of these manufacturing changes, but the shortage has continued into May.

I never imagined having a shortage of drugs, let alone a handful of drugs, and that happens from different manufacturers. It comes from drugs from different countries of origin, so the reasons for the shortage are unclear and apparently multifactorial, Parilo said.

Hours spent calling pharmacies

Carter has spent hours of her time calling pharmacies to try to find her son’s ADHD medication, which she says does more than just help him focus. The medicine, Focalin, helps him function and has improved his quality of life.

He just couldn’t do anything, Carter said of how it was for his son before he was diagnosed with ADHD, he said he couldn’t self-regulate or control his emotions without his medicine.

ADHD, or attention deficit/hyperactivity disorder, is a neurodevelopmental disorder. Exhibits an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development, according to the National Institute of Mental Health.

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Life was so overwhelming that she couldn’t control herself in many different ways, but with the medicine…she’s happy. Smile, Carter said. He is able to function as a normal eight-year-old should instead of not being able to control the emotions he has.

The longest Carter has spent calling multiple pharmacies is more than four hours trying to find Focalin, and her husband has had to leave work early to get to a pharmacy before it closes. She needs to start with CVS Pharmacies as her family’s insurance requires going through CVS first, which may help her as CVS Pharmacies can check within a 20 mile radius for other locations that may have it.

If you can’t find the drug at a CVS pharmacy, you must get permission from your insurance to go through a different pharmacy.

Once I leave the CVS network, I literally have to start calling pharmacy after pharmacy, Carter said.

It even got to the point where she will find a pharmacy that has it in stock, but someone else will fill it and buy it before her child’s doctor sends the prescription to that pharmacy to be filled.

There have been several times when the doctor has seen it and called it, we’ve lost the supply they had, so I have to start over, Carter said.

If your child has to go without his medicine, he may start to experience withdrawal symptoms, such as severe headaches.

Controlled substances under limits

Drug shortages can happen for many reasons, the FDA says, including manufacturing and quality problems, delays and disruptions.

The DEA’s new quota changes, along with allocation practices established after the opioid legal settlements, are exacerbating controlled substance shortages, which are 12% of all active shortages and include ADHD drugs , according to the American Society of Health System Pharmacists.

Drug makers fail to meet those quotas, the DEA says, saying the companies could have produced more but chose not to.

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For amphetamine-based drugs like Adderall, in 2022, manufacturers did not produce the full amount those limits allowed them to make, according to the DEA and FDA.

Based on internal analysis of inventory, manufacturing and sales data submitted by manufacturers of amphetamine products, manufacturers sold only about 70% of their allotted quota, according to a joint letter from Anne M. Milgram, DEA administrator, and Dr. Robert Califf. , FDA Commissioner.

The DEA has also sought more transparency from drugmakers, including requiring drug companies to submit advance production timelines, report monthly on the amount of drugs produced and shipped, and report whether those drugs will be used domestically or exported.

Shortage of generic drugs

Generic drugs are less profitable, so drug companies have less incentive to make and sell these drugs.

About 70% of the share of drugs in short supply in the US are generic drugs, according to Pharmaceutical Research and Manufacturers of America (PhRMA), a trade group representing the US pharmaceutical industry.

When something becomes a generic drug, the profit margin continues to shrink and it leads to a point where the manufacturer can’t make money producing the drug, said Eddie Pauline, president and CEO of Ohio Life Sciences Association, a trade group representing the biotechnology and other life sciences industries in Ohio.

In cases like this, there needs to be some kind of federal or state incentive to make a business case for it, Pauline said.

About 40% of generic drugs were supplied by one manufacturer, and the average number of manufacturers per drug was two, according to PhRMA.

Given that the majority of prescription drug shortages are generic, policymakers should prioritize public policies that stimulate infrastructure investments that can increase the resilience of drug supply chains with a long history of drug shortages , PhRMA said in a statement.

Some target insurance companies, many of which do not cover certain drugs or brands, and/or require prior authorization, which can be lengthy and error-prone.

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If the online submissions for prior authorization are not filled out correctly, the patient sometimes has to go through the process of sending documents from their insurance company and medical records, said Alyssa Overton of Eaton.

It was really ridiculous, but then I would have to fill it out by hand and then compile the records and manually fax them over, Overton said of helping others go through the pre-authorization process.

Overton has had to go a week without his ADHD medication. Her husband had to go without his medication for about six weeks because of challenges between his insurance company and his pharmacy after a data breach at United Healthcare, she said.

Families like the Carters have been increasingly lucky to find access to the medications they need, but they’re still waiting for the other shoe to drop again.

My blood pressure goes up every month, Carter said. …I will move mountains for my son. If necessary, I will sit down and call all the pharmacies. It makes me sad, though, to think of parents who don’t have the skills or don’t.