Shortage Stories

Every drug shortage has patient warriors fighting for their lives. Every warrior has a story. See more videos of warriors here. Read our Shortage Story blog posts below.

Brannon

Elisabeth

Aileen

Michael

Ryan Dwars

Grace

Yahia

Jasmine

Alaia

Jackson

Cole

Emma

Finn

Jennifer

Gavin

Bryton

Graysen

Spotlight: Graysen

I was diagnosed with ADHD around 1st grade, at about 7 years old. My doctors prescribed a medication which in its generic form is called methylphenidate. I started noticing my parents having issues accessing the medication when I was in middle school, around 12 years old. Around the time of Covid, it went into shortage which means that I’ve been dealing with these shortages for about 5 years now. 

In middle school I didn’t heavily rely on medication. When doctors adjusted my dose to stretch it through shortages, I didn’t feel a huge effect. But in high school, with more rigorous studies, I felt the effects much more. Eventually, the generic form of my medication went into a shortage Doctors and pharmacies scrambled because no one knew what was available. So it’s not like there is one specific moment where I was denied my medication. It’s happened all the time from the start. 

Now I’m 17 and a high school junior, so the stakes feel higher. This is the year colleges look at for admission. When I’m on my medication I’m focused, motivated, and manage my time better–crucial for success in school. My 504 learning plan grants me extended time to do my work, and when I have the right dose I can do everything in that window. Without it, ADHD symptoms get in the way. I have a harder time focusing, remembering things, and sometimes I struggle to sit still. These issues don’t always come on all at once, either; they vary from day to day. 

ADHD medication, a controlled substance, comes with strict rules. I get a precise dose and can’t refill until a set time, even if I know a shortage is coming. So I’d have to wait to even put in my refill, and when I was finally allowed to do so, the drug had become unavailable. When shortages struck, my parents would call pharmacies, racing to secure my prescription before it was gone. Sometimes they succeeded; other times, they didn’t. I was lucky to live in a city with at least three pharmacies close by, even more within a 45 minute drive. People in rural areas with just one pharmacy had no options. 

This issue both interests and confuses me. I’ve loved science and medicine since I was a little girl–Doc McStuffins made me want to be a pediatrician. So for a high school service and research project, I chose to look into drug shortages. I emailed organizations like Angels for Change, based in Florida, which I discovered during a trip there. My research confirmed what they know: a lot of people in the U.S. and around the world can’t find the medication they need because of drug shortages. But ADHD medication shortages seemed underexplored, so I decided to share my story to raise awareness.

When I interviewed my pediatrician for my project, I learned a lot of ADHD medication issues started with Covid. Everyone was stuck at home, and diagnoses increased. He thought some cases might have been overdiagnosed through telemedicine. Others might have been misdiagnosed because symptoms may have been caused by isolation or disrupted schooling rather than ADHD. However, doctors are usually too busy managing the effects of shortages on their patients to analyze the causes. 

A friend of mine who recently started taking medication could not get their preferred drug because of a shortage and was put on a stronger one. It has harsher side effects and is harder to taper off. This highlights another issue: when the medications doctors think are best vanish, patients are left with alternatives that can do an equal amount of harm than good. 

I’ve stuck with methylphenidate, but my dosages have been erratic–and this is a big deal because for this medication to be most effective it needs to be taken in the correct dose, on time, every day. But the medication comes in 18 mg, 27 mg, 36 mg or 54 mg. So for a while I’ll be taking, say, 54 mg of medication a day. Then that dosage will go on shortage and my doctor has to recalculate the dosage of my prescriptions to equal my daily dose of medication. I would receive new prescriptions of 18 mg pills three times a day, or 27 mg pills twice a day, or a prescription for an 18 mg and 36 mg pill once a day. The issue though is regardless of strength, bottles come with 30 pills, a month supply of one pill a day. With 18 mg three times, those 30 pills run out faster, and refills aren’t allowed mid-cycle. So what do I do? Take less than my optimal dose? At that point the doctor may switch me to a new combination of 44 mg a day and a 10 mg mid-day booster. It became impossible to get the 44 mg prescription, so my doctor dropped it, bumping my other doses higher. This resulted in increasing my overall daily intake of the medication so I could have the mid-day booster needed.

It’s a constant see-saw: brand-name goes on shortage so we turn to generics. Now generics are in shortage and brand names are back. Availability varies by region, and no one knows what’s in stock or when.

The problem, as most see it, is lack of communication, or what the industry calls “low levels of transparency” between manufacturers, governmental organizations, pharmacies, doctors, and patients. Manufacturers blame material shortages or quotas set by the government. The government says manufacturers aren’t meeting quotas. No one shares resource details. It’s like no one is talking, and doctors have no way to contact manufacturers to predict shortages or how long they will last. This leaves patients and doctors in the dark, managing as best they can.

This can be so frustrating, and it’s easy to feel like giving up. So to others facing shortages like me I say: try to adapt. Right now, unless you can find someone who has influence in this area, it’s all we can do until the system changes. And that’s a job for the adults. I’m not quite there yet, and I know that it’s probably not fun or easy, but it would be really nice if everyone in these industries could just talk to each other. Lines of communication need to be kept open so these shortages don’t keep happening, because when they do, it doesn’t just hurt one person. ADHD, the most common childhood disorder, affects millions of children all over the country. Without medication, school performance suffers, and this could potentially shape a child’s entire future.

No child should have to navigate a medication maze in order to do well in school.  I’m grateful for organizations like Angels for Change that are helping bring awareness of these issues to the world and to the adults who can work together to make a lasting impact on the future of medicine.