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Lupus Research Alliance of America: Hydroxychloroquine (Plaquenil) Shortage

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lupus-support1Administrator
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As you know, because of the possibility that Plaquenil (hydroxychloroquine) might be useful as a treatment for COVID-19, a serious shortage has developed which makes it very difficult for lupus patients who rely on this medicine to refill their prescriptions. While this shortage is more acute in some parts of the country than others, lupus patients everywhere are dealing with this problem.

The Lupus Research Alliance, along with many organizations in the rheumatology community, has worked very hard to alleviate this shortage and we are beginning to see some progress. A number of manufacturers have dramatically increased production, and additional product has begun to flow into the market. We have heard anecdotal reports that things are improving, albeit slowly. We will continue to monitor the situation closely.

It is unclear whether Plaquenil is an effective medicine for COVID-19. Many hospitalized COVID-19 patients are now given Plaquenil immediately upon admission and for at least an additional 4 days after that. Often, Plaquenil is given along with azithromycin, an antibiotic. Despite the lack of definitive proof that this regimen helps patients, it is prescribed for hospitalized patients because of anecdotal, but non-definitive, evidence that it works along with the excellent safety profile of Plaquenil. Plaquenil is sometimes being prescribed for COVID-19 patients recovering at home and is being hoarded as a medicine touted to prevent infection.

Within the next several days to several weeks, more reliable data about the efficacy of Plaquenil for COVID-19 may emerge. Nobody knows what this data will demonstrate. If Plaquenil proves to be of no value for COVID-19, demand will probably drop and the shortage will abate. If Plaquenil turns out to be beneficial for any aspect of COVID-19 infection or to help prevent COVID-19 infection, it is likely that demand will skyrocket. Right now, all we can do is speculate about what the data will ultimately show.

Here’s what lupus patients need to know. If Plaquenil proves to be effective in treating or preventing COVID-19, it is possible, and perhaps likely, that serious shortages will confront lupus patients in the short and intermediate term. The Lupus Research Alliance will do everything possible to ensure that these shortages are resolved as quickly as possible, but the reality is that for some period of time, lupus patients may have real difficulty accessing this medicine.

We are bringing this to your attention now so that you will have time to develop a plan with your rheumatologist. We urge all patients to contact their health care provider in the near future to make decisions about what course of action to take in the event that Plaquenil becomes temporarily unavailable.

The good news is that alternative treatment strategies exist. Patients who control their lupus with Plaquenil and other medicines may find that those other medicines are adequate to prevent a flare. For patients who control their disease exclusively with Plaquenil, their rheumatologist might recommend a temporary switch to an alternative medicine until Plaquenil becomes available again. Because the risk of flare for patients who stop Plaquenil typically doesn’t escalate for several weeks, rheumatologists might recommend that patients do nothing but watchful waiting for some period of time. The advice rheumatologists offer to each patient will be different, depending on the circumstances of that patient’s experience with lupus. That’s why it is important for lupus patients to discuss this with their physician to develop a plan tailored for them.

All of us hope that effective treatments for COVID-19 are discovered and that Plaquenil will continue to be available to lupus patients who have been taking it for years or even decades. Given the uncertainty, it is very important that lupus patients be prepared for any eventuality. The best way to do that is to contact your rheumatologist and make a plan as soon as possible. That way, if the Plaquenil shortage becomes worse, lupus patients will know the best course of action that they can take under difficult circumstances.

Please be assured that the Lupus Research Alliance will do everything possible to guarantee that any Plaquenil shortage is resolved as quickly as possible; we are working tirelessly on this issue. In the interim, call your rheumatologist, make a plan, and feel free to contact us if you have any questions.

Sincerely,

Kenneth M. Farber

President, Lupus Research Alliance

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fabwheelieModerator

The Charity Lupus UK have this information

lupusuk.org.uk/covid19-hydr...

There is "work going on in the background" to ensure supplies of hydroxychloroquine for Lupus ( and similar clinical need) patients

I personally also contacted my MP following seeing what this Lupus UK article says about getting UK government involvement

I referred to the above Lupus UK link, and this link in the Guardian newspaper about it ...

theguardian.com/world/2020/...

For people who find often even in "normal circumstances" they have problems getting specific brands of hydroxychloroquine this information may also be useful . I know some people do have to try certain brands of the medication as otherwise they don't tolerate side effects. This link has good info the pharmacy can use to try help

lupusuk.org.uk/hydroxychlor...

Lupus Europe also had a survey on their Facebook page to help "track people's experiences" of hydroxychloroquine supply during the current covid-19 pandemic emergency ....

m.facebook.com/LupusEurope/...

British Society of Rheumatology ( BSR) also have this information, copy and pasted from the reference link given here

"

BSR has raised this with NHS England and been assured that sufficient supplies are currently available in the UK. Stock has reportedly been low, but further supplies have now been released to wholesalers. Therefore, relevant pharmacies should be able to order what they need. If this is not the case, please contact us.

"

Ref rheumatology.org.uk/news-po...

Hopefully with all this effort Lupus patients needs will be catered for 💜💜💜