Treatment Delays Continue to Increase for Vulnerable Patients

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor

There were numerous news reports over the summer about patients experiencing medication delivery delays being caused by the ongoing issues confronting the United States Postal Service (USPS). For patients who rely on mail-order prescriptions it is problematic. For those patients who are people living with HIV, it is even more problematic. Why?

Photo Source: NBC News

“Make certain you take your meds at the same time, every day, and never miss a dose.”

This was the first piece of advice I remember hearing about HIV medications, back in the 90s, and also when I started on my first regimen (Norvir, Lexiva, + Truvada). I had to store the Norvir capsules in the refrigerator and take my meds to work in a waterproof baggie kept in a lunchbox with an icepack – if the pills got wet, the dyes in the Truvada would melt everywhere, and it was just a freakin’ mess.

When I moved to Tennessee from Ft. Lauderdale, Florida, my Ryan White Part B meds were delivered via mail order, and I had to remember to reorder meds, every month, or I would be left with no alternatives, but to skip a dose. And skipping doses is very bad business, I was told.

“If you miss your dose, take it within 24 hours, or your virus will mutate, and you’ll become resistant to your meds, making it harder to treat!”

This was the conventional wisdom, for much of our treatment knowledge around HIV, because the older regimens had shorter half-lives (the presence of the drug in the blood decreased more quickly over time). As regimens have improved, we’ve seen 72-hour half-lives in some regimens, and research indicates that missing a single dose won’t cause the development of a drug resistance (Tong, 2017):

Wohl explained that people most commonly miss antiretroviral medication doses because of events in their life that cause chaos or get in the way of pill-taking. It’s not because HIV antiretroviral pills are harder to take than other pills or because they cause more side effects. (Tong, 2017)

When I moved from Los Angeles back to Morgantown, West Virginia, I was receiving prescriptions in three-month amounts. I had my ex send me my prescriptions via the USPS, and the first time, everything went perfectly. The second time, in July, the delivery went astray, which forced me finally get meds, here in WV, instead of relying upon my California AIDS Drug Assistance Program (ADAP) prescription to run out, but there was a sincere scare, there, that I would miss several days’ worth of Stribild.

That single mail mishap – which was apparently left where dogs were able to carry it off – resulted in a panic like none I’d ever faced; one that I’m seeing replicated all over the U.S. as a result of recent mail delays.

2020 has been a nightmare, on a number of fronts: a global pandemic, an incompetent U.S. response to said pandemic, and criminally competent administrative officials determined to disrupt and delay mail delivery in the U.S.

COVID-19’s arrival in the U.S. resulted in a very bad set of circumstances for the HIV world:

1.) For those most at risk of contracting HIV, organizations and agencies that traditionally provided regular HIV testing as a part of their services (e.g. – Harm Reduction Programs, Syringe Services Programs, Health Departments, Free Clinics, et cetera) have been forced to reduce their hours of operation, change the way they operate by limiting access to on-site facilities and reducing off-site/mobile services, or cease operation, altogether;

2.) In response to the threat of overcrowded hospitals and physicians’ offices led to extreme measures being taken to limit the number of persons allowed in buildings at any one time, with many existing HIV patients having to reschedule their visits for months later, in the hopes that circumstances would improve;

3.) For those receiving their medications via mail delivery, a number of critical changes put in place by a newly confirmed (and supremely unqualified) USPS Postmaster General have led to the destruction of mail sorting machines, the removal of overtime approvals, and an order that mail trucks leave regardless of whether or not there is still mail to load. This has resulted in mail delays of days – in some cases, even weeks – which, for people treating their HIV, can mean the mutation of their virus and the development of multi-resistant strains.

To be fair, there have always been minor snafus with mail order medications. A lost prescription; deliveries to the wrong addresses; weather-related mail delays. Since July 2020, however, these mail delays have gotten longer and more serious (Soprych, 2020).

Photo Source: The Spokesman-Review 

Medication delays create a terrifying feeling of helplessness – there’s nothing that you, as a patient, can do to make postal/parcel workers find your medications, any faster; few pharmacies have in place the ability to narrow down or track medications using any GPS tracking; depending on the price of your medication(s), insurance companies and/or Medicaid may refuse to replace lost medications.

There is an abject feeling of despair, wondering whether or not you could’ve done something differently. You run scenarios in your head of going to get your mail, and to find it waiting for you with a note from a neighbor or the carrier, apologizing for the delay. You entertain vengeful fantasies of mail carriers fired for their incompetence. All the stages of grieving, all over some lost pills.

The worst is when you try to make do by trying alternatives – purchasing individual doses from the pharmacy, is one:

Matheny called the Postal Service about his prescription and was told that employees couldn't locate his medication. He called his insurer, but it wouldn't approve another refill because the medication is too expensive.

So, Matheny has been buying a single blood thinner pill from a community pharmacy every few days, when he can afford it. He has spent more than $400 so far. (Pfleger, 2020)

I did the same, once, with my HIV medications, in Los Angeles: $600 for three days of medications. As a waiter in a sports bar, I could bring in $120, on a Friday or Saturday night. During the week, I’d be lucky to break $100. Every dollar I made, in one week, went to purchase meds for three days.

For patients who live in rural areas, however, access to a pharmacy willing to do this may be entirely out of the question. For those patients, mail delivery may be the only way they can reliably receive medications. This makes the types of consistent mail delays that have occurred since July – when many of these policy changes were introduced – wholly unacceptable. 

Worse, still, is that no one will be held accountable for the negative consequences of these policies. No postal officials who approved these “cost saving measures” will be hauled before a court of law and charged with the deaths or criminal negligence that results from these delays, because that would require a system being in place to hold them criminally liable.

So, what can be done?

Much like those patients who are relying on a crippled USPS, the only thing to do is wait.

References:

• Phleger, P. (2020, August 25). Postal Service Slowdowns Cause Dangerous Delays In Medication Delivery. Washington, DC: National Public Radio: Side Effects Public Media: Shots. https://www.npr.org/sections/health-shots/2020/08/25/905666119/postal-service-slowdowns-cause-dangerous-delays-in-medication-delivery
• Soprych, C. (2020, September 10). Mail delivery mostly on-time until July [Graphic]. Spokane, WA: The Spokesman-Review: News. https://thumb.spokesman.com/KpKPwHsKl5SlEp-AZMgy7F0rnoE=/1200x0/media.spokesman.com/photos/2020/09/10/5f5b027f540f3.image.jpg
• Tong, W. (2017, December 04). Here’s what you need to know about HIV drug resistance. San Francisco, CA: San Francisco AIDS Foundation: Treatment. https://www.sfaf.org/collections/beta/heres-what-you-need-to-know-about-hiv-drug-resistance/

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.