Over the last several years, it seems to be increasingly difficult to obtain various dosage forms most commonly used for our pediatric patients with HIV. Unfortunately, there does not appear to be a common denominator or theme between drugs, dosage forms, or manufacturers. As a clinical pharmacist at an academic medical center, I'm acutely aware of the impact of drug shortages and manufacturer backorders have on the care of patients during admission. What concerns me is this problem with backorder specifically with ART medications persists and appears to be getting worse. Even though I learn of new and novel ART formulations in the pipeline, I continue to be frustrated, disheartened, and embarrassed almost daily with the ability to acquire ART right here in the US for some of our most vulnerable children patients because of supply chain issues.
I have spoken with colleagues in other states and in different practices and this appears to be a much more common problem than even I was aware. Because these issues involve different drugs, different manufacturers, different considerations/restrictions, etc., I am not sure there is a single, universal solution. But I believe if the US plans to End the HIV Epidemic, there will need to be an initiative to specifically address this ART supply chain issue or the pediatric population (and some adults) will continue to struggle with having ART options available to them.
I'm wondering whether others are experiencing similar issues and what the Academy can do to raise awareness and advocate for improvements on a national level.
Thank you for bringing up this important issue. In my ~19 years as a pharmacist caring for children with HIV, I have never had medication access issues like I have faced in recent times. The discontinuation of many older medications and/or dosage forms and the backorder of other commonly used medications has forced our hands to move (typically stable) patients to new medications or less ideal dosage forms. This is highly concerning because we want to preserve as many medications options as possible for these children to use as they age, and unnecessarily exposing them to new drugs or drug classes opens them up to potential drug resistance development. In addition, insecurity about medication availability from month to month is extremely stressful for our patients' parents and using less than ideal dosage forms causes daily stress and inconvenience to patients and parents alike. My largest concern currently is for HIV exposed infants, particularly those at high risk. Access difficulties with zidovudine are increasing, nevirapine is extremely difficult to obtain, and raltegravir powder packets are stocked in a very low supply by our wholesalers and have a shipping delay. I spend an increasing amount of time obtaining medications for these babies, and it's very hard to explain these supply issues to mothers in this already challenging situation. At the last national HIV meeting I attended, one of the speakers said "we don't use these medications anymore" in reference to medications used frequently in pediatric patients. I think pediatric patients are an overlooked population in our HIV care community. We need to advocate for them and their unique medication related needs!
Thank you for posting this and for everyone sharing their experiences!! We have the same issues here in Oregon. At first I thought it was maybe a regional or volume related issue but, from other responses, it sounds like a more common, widespread issue.
These Pediatric ARV supply issues have seemed to be at a much higher level than what I can figure out after spending hours on the phone with manufacturers, distributors, and dispensing pharmacies.
We are also often left with having to use less optimal, more cumbersome ARV regimens for our kids simply due to not having access at all or stable access to the ARVs that we would rather be using. I hope that the AAHIVM can advocate on a national level with the supply chain stakeholders and any policies related to the national pharmacy distribution system that may be contributing to these issues. It seems like it's been worsening over the last 3 years or so.
I echo other responders' concerns for:--The less optimal ARV regimens we are forced to use--The added frustration and stress for the families each time they are due for a refill and our inability to help navigate through the supply issues--The intermittent availability of infant prophylaxis for all perinatal transmission risk categories
I'll add also that it once took us a month to get raltegravir 25 mg chewable tablets for kid with extensive resistance. This is also the preferred third agent for pediatric PEP so the inability to get this in a timely manner is disturbing for prevention as well. Especially now that the alternative pediatric strength of lopinavir/ritonavir is also difficult to get in stock.
I'm happy to share more specific case scenarios or other information to help in any to work toward finding a solution to this.Thank you again for starting the conversation!