Share/Bookmark

Potential Hydroxychloroquine (Plaquenil) and Chloroquine (Aralen) Shortages

Cure JM is aware that there could be shortages of hydroxychloroquine (Plaquenil) or chloroquine (Aralen) in the pharmaceutical supply chain. If your child is on prescription for either, we urge you to contact your clinician, pharmacist, and insurance company about obtaining a 60-90 day supply.

While the reasons for a potential shortage are complex, one driving factor is the potential of these drugs to mitigate symptoms of COVID-19, which will drive up demand. Although efficacy in COVID-19 has not been clinically proven, trials are underway. If warranted, Cure JM, along with other organizations, will urge the federal government to support efforts to ramp up production so no individuals reliant on hydroxychloroquine or chloroquine are at risk of running out of supply.

If your child is on other medications, be sure to ask your pharmacist about the stability of supply as it may be important to secure a 60-90 day supply of these medications, as well. Cure JM will continue to monitor supplies of all JM medications.

You can learn more about the hydroxychloroquine clinical trial, which is taking place in China, here.

Additional clinical trials for other existing drugs including Actemra (Roche), Avigan (Fujifilm), and Kevzara (Sanofi, Regeneron) for COVID-19 are taking place internationally.

In response to the the hydroxychloroquine (Plaquenil) shortages many of our families are facing, Cure JM Board Chair Mitali Dave and President Nikki Hahn wrote to FDA Commissioner Stephen Hahn urging the FDA to require manufacturers and distributors to reserve adequate supply of the drug for JM children and other autoimmune patients. You can read the letter here.

Sample Letter for Congress

Cure JM is at work to do what we can to alleviate the shortage, and here is what you can do to help.

You will find a letter linked below as well as at the end of this email to send to your members of Congress—your U.S. Representative and two U.S. senators. CLICK HERE TO DOWNLOAD THIS LETTER IN WORD DOC FORMAT.

Please take a moment to review the letter, personalize with your information, and send by both email and regular mail. If we can all do this in the next few days, we might well have an impact on the legislation needed to create subsidies or necessary incentives to increase hydroxychloroquine production. Your participation will have an impact, even if your child is not currently on hydroxychloroquine.

Here are instructions on how to craft and send your personalized letter:

  • If you are comfortable doing so, personalize the letter with your child’s name and any other information about their condition you care to share.
  • Please use the letterhead so staff members recognize that many of their JM parent constituents are connected and share the same concern. Be sure to have your return address at the top so members of Congress know you are a constituent.
  • You may sign it as a Parent Advocate, and if you are involved in any Cure JM chapters, please add, for example, “Member, _________ Chapter.” This will add to local or state identification. If you are an adult with JM, please sign as a Patient Advocate.
  • You can find email instructions on your U.S. Representative’s or Senators’ websites. It would also add to the effectiveness to send a hard copy letter to the district or state office of your Representative or Senators. They are inundated with e-mail. Personal letters generate more attention. You can find the emails, phone numbers and mailing addresses of your Senators and Representatives here.
  • Please feel free to follow up by phone. You will probably be referred to a designated staff member (which is fine) who will report to the Member a surge of urgency on this issue. It’s OK — and actually good — to be a squeaky wheel. If you do speak with a staffer, the best course of action is to ask the staffer what action the Member is willing to take, and to ask that they (the staff member) call you back with an update in a few days. 

Cure JM is small but mighty. If we all do this, we will maximize impact!

Cure JM Logo

 

Insert Your Return Address

March __, 2020

The Honorable ______________
Insert Address

Dear (Senator, Congressman, Congresswoman) Last Name:

I am writing to you out of grave concern and fear that, in our country's efforts to stockpile hydroxychloroquine as part of a possible treatment for COVID-19, we are in danger of inadvertently trading some lives for others. 

My [age year-old son/daughter,grandchild Name of Child], has a rare and potentially life-threatening autoimmune disease that attacks the skin and organs called juvenile myositis, or JM. Already at risk because of their weakened immune systems, children with this disease are highly vulnerable to a virus like COVID-19.

One of the medications that is used to treat JM is hydroxychloroquine. Ever since it was announced that this may be a potential treatment for COVID-19, pharmacies have been deluged with requests, and many are now completely out of stock.

Hydroxychloroquine is also used as a life-saving first line drug therapy in other diseases such as lupus.  In short, there are hundreds of thousands of Americans who rely on access to this drug as a course of treatment, and who may not survive without it.

I am writing to urge you and Congress to act in two ways:

  • The government must step in to assure an adequate supply of Hydroxychloroquine for all who need it. We already know that Bayer, Sanofi and other manufacturers are willing to step up and increase production, and our government can facilitate this by providing subsidies and lowering barriers to speed the process.
  • Consider legislation that provides emergency guidance to physicians, hospitals, and pharmacists that would assure some level of predictable supply of hydroxychloroquine to patients whose lives would be at risk without the drug.

We all hope that hydroxychloroquine may prove to be effective against this dangerous virus. Today, there is no clinical proof that this drug is effective in treating or preventing COVID-19.  

As the (mother, father, parents, grandparents) of a child with a life-threatening illness, (I, we) well understand that critically ill COVID-19 patients will want to try any treatment—even unproven ones—that carry hope.   We would never wish to deny them that hope, which is why government must act and act now to assure an adequate supply for all.

Thank you for your attention to this urgent need, and please know that my own fear that my child will run out of supply is shared by tens of thousands of other parents throughout the country whose precious children are at risk.

I appreciate your dedicated service to our country, and look forward to your response.

Thank you and be well,

[Your Name and Signature]
Parent Advocate
Cure JM Foundation

CLICK HERE TO DOWNLOAD THIS LETTER IN WORD DOC FORMAT.