Sunset notice - after thousands of hits, dozens of direct conversations on Twitter, and lots of media (honestly, too much), I’m “officially” giving notice that I no longer intend to actively maintain this document. Views have trickled to dozens a day. I am no longer updating this document, but I’ll leave it up for posterity. To our good health - Luke, September 2022

💊 A Patient’s Guide to TPOXX Access

If you have monkeypox (“mpx”) and are trying to access tecovirimat (TPOXX), this guide is for you!

💬 This guide is also available in Brazilian Portuguese translated by volunteer @BenLyons55 - thank you Ben! If you’d like to translate this document into other languages, please DM me on Twitter @Luke_RB.

About this document

Scope

Note that this guide assumes that you know about mpx as a disease and that you live in the US. This guide does not talk about vaccines. To learn more about vaccines and getting one:

1. Start with Googling “monkeypox vaccine + [your city and state]”
2. Check out Grant’s document: Monkeypox Vaccination Access Project
3. Check out GoodRX’s vaccine locator page

Intro

This document shouldn’t exist. Access to medication should be easy. While accessing TPOXX has become easier since the beginning of this outbreak, accessing TPOXX remains complicated. This document tries to make it less complicated.

Disclaimer

This is an entirely amateur effort that relies on volunteers to contribute information. None of the below constitutes medical advice. Please talk to a medical professional if you are feeling sick, or think you may have been exposed to mpx.

Request an update

Anyone can request an addition or update through DM (@Luke_RB on Twitter).

Document structure

This document is written in “plain English”^[1] with footnote references (little numbers above the words). If you want to read the underlying detail that supports the “plain English”, jump to the footnotes. Detail is also sometimes provided via hyperlink.

Step 1: Educate yourself

1.1  Learn about TPOXX (antiviral medication)

What is it?

TPOXX is a drug used to treat smallpox, and can also treat people who have mpx.^[2]

How does it work?

TPOXX stops the mpx virus from making more copies of itself in the cells of your body.^[3]

How well does it work?

Some people report feeling better within 24 hours. Others report feeling better in a few days.^[4] No large efficacy trials have been completed in humans to date. Prior to this outbreak, monkeypox has not regularly spread in large numbers beyond Africa, so there have not been opportunities to conduct research on efficiency of vaccines and clinical treatments like TPOXX (and it’s not ethical to intentionally infect people then try to treat them!). Efficacy has been evaluated in monkey and rabbit models. These animal models show TPOXX is beneficial in reducing the risk of death, lesion count, and viral load.

A recently published article in the The Lancet reports that “One patient [who] was treated with tecovirimat (600 mg twice daily for 2 weeks orally)... had a shorter duration of viral shedding and illness (10 days hospitalization) compared with the other six patients.”

This 2018 New England Journal of Medicine article is highly detailed and contains many deep links to underlying studies related to safety and efficacy: Oral Tecovirimat for the Treatment of Smallpox. I recommend putting on your lab coat on and skip to the Results section 🤓

How do I take it?

Most people taking TPOXX take it as pills. Some people with serious mpx cases may get TPOXX as an IV drip. When you take TPOXX pills, you should eat a meal with lots of fat about a half hour before taking the pills (25g fat / 600 calories).

Are there side effects?

Some people may get headaches or upset stomachs. You should always tell your doctor about all drugs you are taking, especially if you are diabetic or take any medications that make you sleepy: TPOXX has known interactions with some drugs that could be dangerous. People with an HIV diagnosis should also discuss interactions with their antiretrovirals (ART) including:

Is it safe?

Until very recently, TPOXX has only been tested in humans for safety. Healthy, uninfected people were given doses and they were monitored for adverse reactions. A recently published article in the The Lancet reports that “One patient [infected with Monkeypox who] was treated with tecovirimat (600 mg twice daily for 2 weeks orally) experienced no adverse effects.”

1.2 Learn about the federal rules around TPOXX

The CDC updated the rules about getting TPOXX meds on Jul 22, 2022. Here are some important facts:

1. You can start taking TPOXX even if you are waiting on a test result, as long as you and your doctor both think you have mpx. You should still get tested anyway to be sure!^[5]
2. Your doctor is allowed to prescribe TPOXX for you over a video call. You don’t have to go into the doctor’s office to get TPOXX meds.^[6]
3. The federal government has said this medication should be given to patients for free.^[7]
4. Having clear photos of your lesion may help with your case for TPOXX. That being said, photos of your lesions are optional.
5. If you are getting TPOXX, your doctor will make you fill out forms required by the CDC. You’ll be filling out this Informed Consent form and this Patient Intake form. Your doctor will provide these to you.
6. In very rare situations, you can get TPOXX meds if you know someone around you had mpx, even if you don’t feel sick or have tested negative. If you start taking TPOXX meds and then test negative, your doctor may want you to test again. If you test negative a second time, your doctor might tell you to stop taking the meds.^[8]

Most of this info is from this page from CDC, the Centers for Disease Control and Prevention. This is the page they put up for doctors. However, mpx is very new for many doctors, and they may not know all the steps here. This is helpful for you to know, too. The most interesting document on this page is the Protocol 6402 PDF, which is the source of many of the footnotes above.

1.3 Learn the local rules around TPOXX

Being familiar with your local health department’s messaging to doctors on TPOXX will be helpful to you. Usually, getting TPOXX meds depends on your local health department. For example, doctors in New York City must go through the NYC Department of Health (“NYC DOH''). Google for your local health department, and try to find any websites that give instructions to doctors. Here’s the one for NYC DOH, for example.

Step 2: Find a doctor to prescribe TPOXX

I recommend trying to find a doctor in the following order. You can also try reaching out to multiple doctors at once.

1. The doctor that prescribes you PrEP
2. Your primary care doctor: if you have a doctor you see regularly for everyday health concerns, call them
3. Check if your city is in the Prescriber Directory section of this document.
4. Your local sexual health clinic.
5. Your local health department. You can find your local health department by clicking the link below. When you call, ask to talk to a team that deals with Monkeypox, Sexually-Transmitted Infections (STIs), or Infectious Disease: Directory of Local Health Departments
6. Try calling public hospitals in your area.

Step 3: Ask questions and advocate for yourself

1. Have empathy: trust that your doctor wants to help you and know that this is new for them, too. Try to have patience. This can be especially hard when you are in pain and are scared. Hang in there.
2. Be ready to ask questions and write down the answers. You might have to push to get information and be heard.
3. Know that there is lots of TPOXX (1.7 million courses!).^[9] TPOXX meds are not in short supply. In my personal non-medically-trained opinion, there is no reason to save this medication for “severe” cases. There is plenty to go around. You deserve medical care: period.
4. Ask about how getting TPOXX meds works in your city. Ask them to tell you each step you will need to get your TPOXX. If you don’t understand something, ask them to go over it with you again. Try to trace every step from your current appointment to getting TPOXX in your hands. Be patient - your doctor may not know. Steps that might be required which you should ask your doctor about might include:

1. Do I need a positive test result before you will prescribe? (See 1.2, bullet 1).
2. Has your office coordinated with the CDC to prescribe TPOXX? (Each doctor’s office needs to submit paperwork to CDC which allows that doctor to access TPOXX under the EA-IND protocol - expanded access for investigational drug).
3. Do you have to obtain permission from the local health department so you can prescribe? How long does that typically take?
4. Where is the TPOXX coming from? Do I pick it up? Is it delivered?
5. How much will this cost? (Should be free - see 1.2, bullet 3)

5. Consider asking your prescriber to run tests for common STIs at the same time and ask for tri-site collection (rectal, urethral, and pharyngeal) - there is evidence to suggest that monkeypox infections are frequently coincident with STIs.

Step 4: Recover and pay it forward

Recover

Depending on the severity of your cases, recovery could take several weeks. You will likely experience isolation. You may need to take time off from work, which can be financially challenging and additionally stressful. Combined with the pain, fighting for your own healthcare, and the stigma around this, the whole experience can be mentally, emotionally, and socially exhausting.

The community is going through this together - find others who are going through it and be there for each other. Reach out to friends virtually. Lean on those in your support network that you trust.

Pay it forward

I was very lucky to have people who went through this before me and a humblingly boundless social network guide me through it (thank you Peter, Joey, Mark, Kyle, John, my parents, my PCP - endless friends and strangers on Twitter and Instagram). They gave me emotional support, practical advice on dealing with the pain, logistical advice on accessing TPOXX, etc. After you have recovered, consider doing the same. This might look like:

• Finding where vaccines are available and texting your friends suggesting they get vaccinated
• Message me on Twitter with updates that should be made to this document, including any city-specific information you have (@luke_rb)
• Encourage your friends in the queer community to have frank coversations about this situation, including how most cases in this outbreak are currently spread through sex (the science here is increasingly clear: e.g., R.L. Wu et al, NEJM).
• Keep up with the news so you are equipped to deftly and politely combat misinformation

City-Specific Information

The early parts of this document are intended to be broadly applicable to accessing TPOXX anywhere in the United States. The sections below provide specific advice for accessing TPOXX in particular cities, including a directory of providers we know are prescribing TPOXX. I had hoped that the Jul 22, 2022 update from CDC would significantly simplify access to TPOXX across the country. As of writing (early August), that has turned out to only be partially true. To respond, I’ve started adding back some city-specific guidance on how to acquire TPOXX. These sections are populated by people with first-hand knowledge of accessing TPOXX based on the as-of date of the below information.

New York City

Last updated Aug 4, 2022

Refer to page 3 of this document from NYC DOH for the process doctors have to follow in order to prescribe TPOXX.

You should start with the instructions above and your primary care prescriber. If you are having a hard time getting TPOXX using this route, consider the prescribers below who we know prescribe TPOXX. Please message @luke_rb on Twitter if any of the below is inaccurate:

• *Astor Medical PC (212) 253-2968
• * West Side Family Medicine (ask for James Lauren) 212-280-4740; accepts commercial insurance only
• * NYU Infectious Disease Associates - Bellevue (646) 501-9831
• * Sinai West, Samuels Clinic - (212) 523 - 6500
• Columbia University Infectious Disease 212-305-3174
• ** Weill Cornell Medicine - Infectious Diseases (646) 962-8747
• Ryan Health (ask for Sophie Nurani) - (212) 265-4500

Potentially avoid CityMD - as of Aug 4, 2022, getting reports that they are requiring a positive test result to proceed.

* These prescribers have requested to be on this list. The remaining prescribers are known to provide this medication based on second-hand feedback from others.

* * Got good feedback from getting it here on Aug 4, 2022

Philadelphia

One report from Philly patient in late August: Mazzoni Center (215-563-0658) 

Los Angeles

One report from Los Angeles of having acquired TPOXX using this method:

1. Call to UCLA Ronald Reagan Emergency Department at 757 Westwood Plaza Los Angeles, CA 90095: (310) 825-9111
2. Explain you likely have monkeypox (walk through your symptoms)
3. Get tested at the ER
4. Work with the infectious diseases doctors at UCLA to get TPOXX 

Boston

Report from a Boston patient in late July:

Hey! Thanks for posting the TPOXX info online! Just wanted to share my experience for the Google Doc. In Boston, I got TPOXX at the Massachusetts General Hospital (MGH) through the Sexual Health Clinic before I got my positive test results back thanks to some help from my PCP. The sexual health clinic number is 617-726-2748 and you don't need insurance to get services from MGH

Second report from a Boston patient in late August:

• University of Illinois Chicago: Best experience of the 8 I called. Infectious Disease scheduler got me to an on-call nurse, to an Infect Dis nurse, to an Infect Dis doctor within 30 minutes. They're office was closed, but scheduled a first thing AM appointment, prescribed it, brought up from internal clinical trial pharmacy.

Family Center for Infectious Diseases (FCID)

1801 W Taylor #3 (MC 731)

Chicago, IL 60612

P: 312-996-8337

• Metro Infectious Disease Consultants (MIDC): Super helpful. Called main number (888) 220-6432, was connected to doctor that afternoon, said they've treated over 400 cases (offices across many states). They scheduled a telehealth visit, would then need approval from CDC, and could then prescribe TPOXX. Had it on hand, would need to drive to town 20 minutes outside city to pick it up.

• Potentially avoid these (waste of time / byzantine):

• Northwestern
• Howard Brown
• PCP-esque groups like Innovative Express Care (great testing), One Medical, PCPs. Don’t appear to have the expertise to prescribe.

Chicago

Had contact from an infectious diseases doctor who let me know they are prescribing TPOXX here: 312-926-8358

San Francisco

See the bottom of this page.

Austin

Here is a note from a prescriber to a patient in Austin.

“My understanding of the current process is that we provide clinical history and a request for TPOXX use to the Austin DPH. The medication use and dispensing is approved by Austin DPH. We [the prescriber] do not write the prescription. The medication comes from the supply that Austin DPH has and is delivered to us. I believe the process overall is in flux as information and recommendations change, coordinating between states and CDC. We will have more paperwork to do along the way as well as follow ups at certain periods of time, which is part of the TPOXX emergency use authorization protocol. I will work on deciphering those details and will let you know.”

Atlanta

Last updated Aug 4, 2022

• Grady Health System, Ponce de Leon Clinic - (404) 616-1000
• Emory Healthcare - 404-778-7777

Information above provided by a doctor in Atlanta. ​​If the primary care doctor practices at Emory or Grady needs support prescribing TPOXX they can page Infectious disease for assistance.

Seattle

Known to be providing vaccines and TPOXX: UW Medicine Sexual Health Clinic at Harborview - (206) 744-3590

Portland, OR

Multnomah County STD Clinic - 619 NW 6th Ave, Portland, OR 97209 - 503-988-3700

My city isn’t listed

Follow the three steps above. These steps apply to almost every city, generally speaking. If you are able to obtain TPOXX in your city, please contribute that city specific information by DM’ing me on Twitter.

Luke’s Soapbox

Assorted musings and notes from when I was really going through it.

Why is access to TPOXX important?

• This outbreak is causing a tremendous amount of pain. A recent study in the New England Journal of Medicine showed that up to 13% of cases in this outbreak may result in hospitalization. TPOXX is the only therapeutic available to treat this disease.  
• Although this has not been studied in humans, animal models and emerging anecdotes suggest TPOXX is effective at limiting the duration and severity of monkeypox.
• We have 1.7 million doses of this stuff. There is no supply issue.  
• Vaccination and testing efforts are still ramping up. I’m writing from the perspective of late July 2022: over the coming months, there will be a huge wave of avoidable pain - and the only thing that stands between us and ending that pain is access to this drug.

Why was getting access to TPOXX complicated prior to the July 22 CDC updated EA-IND proctol?

The answer here is complicated, but this letter does a good job of explaining the technical regulatory reasons why access is complicated and what can be done to change them. Suggested listenings and readings on this question:

• NPR Jul 18, 2022 coverage: “Monkeypox treatments are difficult to get despite the nation's large stockpile”
• New York Times Jul 18, 2022 coverage: “For Monkeypox Patients, Excruciating Symptoms and a Struggle for Care”

Additional readings and resources

• TPOXX FAQ for NYC - deeper reads on TPOXX
• 🐒 NYC Monkeypox Resources- a document I no longer maintain, but might have good resources in it
• Documentation from the American Cancer Society about how to perform a skin scan 
• “There Is a Monkeypox Antiviral. But Try Getting It. What’s standing between suffering patients and proven relief? Reams of government paperwork.”
• CDC COCA notice, Jul 19, 2022 “Steps for Clinicians to Order Medication to Treat Monkeypox”
• NEJM July 21, 2022: “Monkeypox Virus Infection in Humans across 16 Countries — April–June 2022”
• NPR July 18, 2022 “Monkeypox treatments are difficult to get despite the nation's large stockpile”
• NBC News Jul 6, 2022”Lesions, headaches, debilitating pain: Gay men with monkeypox share their stories”
• Monkeypox Tips community google page