RESUMEN
BackgroundEarly 2020, short supply of hydroxychloroquine sulfate (HCQ) – then claimed as effective for treatment of COVID-19 in several countries - raised significant concerns for those who use HCQ for chronic diseases including SLE. In April 2020, Lupus Europe launched a survey to quantify the access gap, as well as the anxiety expressed by patients confronted with this outage. 2422 patients responded with an average level of anxiety about access to HcQ of 6.45 on a maximum of 10. After supply issues were resolved, a follow up survey (Aug-Sept 2020 – 1854 answers) showed a significantly reduced anxiety of 4.15. A second follow up survey (Nov 2021 -Feb 2022 - 2255 answers) showed a further reduction to 3.54. Importantly, a core group of 6.2-13.7% of patients remains extremely anxious (scoring 9 or 10) about supply of their medication, substantially more than in Portugal (3.5%) and Finland (0%), where supply remained fair at the heat of the crisis.ObjectivesTo provide consensus on how communication should be conducted to minimize the impact of medicine shortages on patient anxiety.MethodsThe Patient Advisory Network (PAN) of Lupus Europe established an extensive list of potential elements of a more effective communication on shortages, that could help reduce patient anxiety. 20 statements were derived from those elements and proposed to PAN members and Lupus Europe member organisations. 101 answers were collected from 17 countries. For each country, the individual ratings of all participants were averaged to assign an individual vote for each country on each statement. Consensus amongst the 17 countries was then considered as obtained if 14 or more of the 17 countries agreed or strongly agreed with statements.Results9 out of the 20 statements reached consensus:1. Lupus specialists should (a) clarify alternative medication existing and its difference versus current treatments, (b) clarify appropriate emergency procedures and (c) clarify to the patients how to handle a short supply.2. Specialists and Hospitals should establish alternative supply mechanisms to guarantee minimum availability.3. pharmaceutical industry should (a) provide all information to all stakeholders and (b) help create emergency supply routes to ensure that no patient is left without his/her medication for a sustained period of time.4. National authorities should help patients with demonstrated need have priority access to limited supply quantities through a simple process.5. Hospitals should communicate (by email or postal mail) information on the shortage, how to handle it and how to access emergency supply routes. The same number agreed with Health authorities performing that same communication.6. pharmaceutical industry should avoid diverting products from one country to another if that would reduce supply below normal consumption level.7. Patient organisations should stop the rumors that can quickly spread though social media.8. pharmacists should be better equipped in terms of data (on the reasons and clear timelines for resolution as well as alternatives or recommendations for patients facing shortages)9. GP's should clarify alternative medication and appropriate emergency procedures.ConclusionShortages of medicine create an anxiety that can be long lasting. Even when supply is re-established, the fear remains. For this reason, establishing an effective communication system is necessary to reassure patients when short term shortages are taking place, and is key to avoid fast spreading anxiety relating to this concern. In this process, patient associations, physicians, industries and all the stakeholders should be involved.Reference[1]Cornet A, Andersen J, Tani C, Mosca M. Hydroxychloroquine availability during COVID-19 crisis and its effect on patient anxiety. Lupus Sci Med. 2021 Apr;doi: 10.1136/lupus-2021-000496Acknowledgements:NIL.Disclosure of InterestsNone Declared.