Since Hydroxychloroquine (HcQ) has been regularly mentioned in media as a potential medication in the fight against COVID, the number of patients highlighting unavailability issues increased substantially. With the help of its members, LUPUS EUROPE initiated a survey amongst patients to obtain broad based feedback on the magnitude and impact of the issue. Results covering the purchase period of march  and beginning April are now available. 

2024 valid answers were received from 28 European countries thanks to a translation of the survey in 11 European languages. 

  • Overall immediate availability of HcQ when asked in the usual pharmacy has reduced from 65% at the beginning of March to 51% end March and 44% early April. 59.4% of respondents have been able to obtain Hydroxychloroquine on the day of request, 18.9% with a delay not exceeding 3 days and a further 12.1% have experienced (or are at the day of the survey reaching) a delay of more than 3 but less than 7 days. 
  • 6.7% of all patients have experienced a delay of 2 weeks or more or are still without HcQ more than 2 weeks after ordering. This extended unavailability significantly varies by country, with Poland highest at 27% followed by Spain (11%). Finland, Germany, Denmark and Slovakia have the lowest unavailability rates (0-4%). 
  • These results exclude Bulgaria, where there was already little or no access to HcQ for lupus patient, even before Covid. This is a major access to care issue in the EU landscape.
  • With regards to the anxiety of potentially not being able to have access to Hydroxychloroquine, 36.4% reported high or very high anxiety (7 to 9 on a scale of 10), and another 20.8% extremely high anxiety (10 on 10). 

More detailed results are available here, together with specific recommendations for action.

LUPUS EUROPE and several of its members have raised, and keep raising the issue with manufacturers and authorities. Solutions have been put in place in several countries, including increased control (or governmental control) on distribution, restricting off label use to hospitals, and establishing an alternate channel to make HcQ available for pharmacies directly based on a prescription for “On label” (like lupus), use. The objective is that, all patients with a chronic condition requiring HcQ get it, if not immediately, at least within 3 days of ordering. Our intention is to re-run the survey in a month’ time to evaluate progress towards that goal.

Guidelines for patients concerned with Hydroxychloroquine availability are available here .

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4 days ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻Doe mee aan de enquête.

🔊Deel met uw gemeenschap.

🙏 Help us and NVLE achieve more answers to ensure that the Dutch population is represented in the results

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5 days ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻Deltag i undersøgelsen.

🔊Del med dit fællesskab.

👨🏼⚕Hvis du er sundhedsprofessionel og behandler patienter med lupus i Europa, ville vi sætte stor pris på, at du informerer dine patienter.

🙏 Help us and Sle-Lupus- info achieve more answers to ensure that the Danish population is represented in the results

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6 days ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻Dalyvaukite apklausoje.

🔊Dalinkitės savo bendruomenėje

👨🏼⚕Jeigu esate sveikatos priežiūros specialistas ir gydote vilklige sergančius pacientus Europoje, būtume labai dėkingi, jei informuotumėte savo pacientus.

🙏 Help us and Lupus Lt achieve more answers to ensure that the Lithuanian population is represented in the results

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1 week ago

✍🏻Doe mee aan de enquête.

🔊Deel met uw gemeenschap.

👨🏼‍⚕Bent u een gezondheidsmedewerker en behandelt u lupuspatiënten in Europa, dan waarderen we het zeer als u uw patiënten deze informatie verstrekt.

s.surveylegend.com/-NqgyeOSaTVcd7gBoK15
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✍🏻Doe mee aan de enquête.

🔊Deel met uw gemeenschap.

👨🏼‍⚕Bent u een gezondheidsmedewerker en behandelt u lupuspatiënten in Europa, dan waarderen we het zeer als u uw patiënten deze informatie verstrekt.

https://s.surveylegend.com/-NqgyeOSaTVcd7gBoK15

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