Welcome back to our blog series on National Member News!
We are very excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each organisation! We caught up with Juan Carlos Cahiz Gonzalez from Federación Española de Lupus aka Felupus , who talked to us about the great work the organisation is doing, the needs of lupus patients in Spain, COVID19 and much much more!
How do you keep in touch with or have contact with your members?
FELUPUS is an umbrella organisation; an association of associations! There are 50-odd provinces in Spain and many of them have local lupus associations. FELUPUS is an umbrella association for the local associations. So the members of FELUPUS aren’t patients themselves, but local associations. We stay connected with our members through assemblies, virtual meetings every month, very active WhatsApp groups, and by email.
We also share on our social networks information that serves to create content for our members, the associations.
The members of the associations are the patients, and they stay connected via meetings, access to the association’s offices, WhatsApp groups, email, and for those with less digital experience, mail by post and phone calls.
We also have physical offices where people can go and talk to us. The local lupus associations, members of FELUPUS, contract with local psychologists to help their members as needed. All association members have access to the psychologist free of charge for the first consultation and pay a small token fee for subsequent ones with the associations covering the gap. This has proven very important during this pandemic as many people suffered from higher level of anxiety.
Did you have any special meetings or webinars during the past year (World Lupus Day, Rare Disease Day, Annual General Meeting etc.)?
Yes, we had several activities like these over the last 12 months. All related content is uploaded to Felupus’ YouTube channel that has free public access.
Of course, we have had to adapt due to the pandemic. We haven’t had any face-to-face meetings over the last 12 months because of the pandemic. But we have organized and taken part in several activities remotely such as the celebrations for World Lupus Day. We also worked with local government to shine purple lights on bridges and buildings for World Lupus Day!
In October we are thinking of having a hybrid meeting with combined in person and virtual elements, depending on the pandemic of course.
Has it been difficult to keep connected with your members during the Covid19 pandemic?
Not for us. We have been well connected, intensifying the frequency of meetings and correspondences. We created a WhatsApp group to keep all of us better informed daily.
Have there been any circumstances during the pandemic that changed the way of living with lupus?
Yes, very notable was the shortage of hydroxychloroquine due to the diversion of stocks of this drug to pharmacies and hospitals for the treatment of COVID19 patients.
We are very proud of how we dealt with this crisis. We presented several requests, with the support of scientific societies (such as SEMI), to the Spanish Agency for Medicines and Medical Devices (AMPS), and to the Ministry of Health, Consumer Affairs and Welfare, indicating that hydroxychloroquine is a basic treatment for diseases such as lupus, and that we could not be without it. A list of patients in need of the drug was created to request, by exception, their access to hydroxychloroquine under a strictly regulated procedure. In Spain, we experienced 10 days without access to hydroxychloroquine for lupus patients.
The pandemic has created a lot of fear among lupus patients who do not know their vulnerability to COVID19, generating some comorbidity: patients leave their homes less frequent and exercise less; thus, increasing the presence of other symptoms such as joint pain, tiredness, and a continuous state of anxiety.
We have really seen an increase in people accessing our psychological support services to deal with the anxiety and uncertainty that have arisen as a result of the pandemic. A lot of our members have stayed home throughout the pandemic and were anxious about how covid19 may affect them because of their lupus. When the vaccines came out people had a lot of uncertainty about the vaccines in terms of how the vaccines may affect them because of their lupus, whether they would be effective et cetera.
During the pandemic lupus patients have experienced a number of difficulties with hospital management and the health system, in general. There were many delays in medical consultations because of covid19. Many patients with chronic conditions, including lupus patients, only had virtual (phone) reviews or had their appointments postponed or canceled. It has been difficult for lupus patients to get consultations during the pandemic. In person consultations were only possible for life threatening issues, by going to the emergency room.
Has Digital Health improved or changed in your country?
So far, there have not been positive changes. Telemedicine by video conferencing is being studied where a doctor can see the patient. However, so far, non-face-to-face consultations are done only by phone. This consultation process, unfortunately, has not helped in reducing delays in face-to-face appointments with delays of more than a year still common. We don’t know when this will improve especially given the recent increases and waves in covid19 infections.
Face-to-face visits have not yet been restored. We believe that it is necessary for doctors to see patients in person.
What would you most need as support in your country for lupus?
Fast patient referrals to reference centres as they become available.
The creation of multidisciplinary units for patients, where a coordinating doctor works together with group of specialists in different pathologies. These units would be supported by psychological resources and specialised nursing. Felupus believes there should be at least one of such units in each province.
Right now care is split and patients have to travel from one hospital and one doctor to another to see their specialists. If you go to different hospitals within the same Comunidad Autónoma (Autonomous community) then doctors can access your health records without issue. However if a patient has to visit different specialists or hospitals across two different Comunidad Autónoma (Autonomous communities), then the specialists are unable to access their health records from the other Autonomous community. This needs to be fixed.
We would like the government to work with us to help build a unique list of medications that specialists can prescribe, covering all patient needs, including sun protectors. Such protectors must be included in the list of medicines covered by Social Security.
Right now sun protectors are not included in the list of medicines covered by Social Security. They’re not free, but they’re not even subsidized. As an association we buy sun protectors with help from companies and we then give the sun protectors to patients for free.
There is a campaign that helps in making sun protectors creams accessible to lupus patients in Spain. This campaign is called Frena el Sol, Frena el Lupus (Stop the sun, stop the lupus). The campaign aims to promote the use of photoprotectors among patients and facilitate their access to quality products through participating pharmacies, which make them available at a reduced price, in a solidarity action in which none of the parties (pharmacy, distribution and laboratory) obtains economic benefit.
As of July 2021, in Spain there are 1,048 pharmacies that are part of the Stop the Sun, Stop the Lupus project, offering coverage to more than half of lupus patients (57%) in the country. Every day there are more pharmacies that are part of this initiative launched in 2015. There is a website of the project in Spanish. It has additional useful information. http://www.frenaellupus.com/
Together with this initiative, we also support a program that helps with the installation of sun-blocking films on car windows to reduce the amount of sun that a driver with lupus may get. This project is supported by the Spanish government since 2012 and allows lupus patients to install this type of protection on their vehicles, which is not allowed for regular drivers due to safety concerns. This program requires a medical certificate from a doctor and the installation of pre-stablished films by selected repair shops to prevent abuse by people non affected by lupus. FELUPUS is working on making the process of approval faster and less cumbersome.
We need help ensuring that the scale of disability considers lupus as its own disabling disease (physical disability) covering lupus-related disability conditions and facilitating job search and placement for lupus patients.
We would like the process of disability recognition to be easier for lupus patients. This is very important for many reasons one of which is that depending on a person’s recognized degree of disability, the government provides a financial incentive to companies to hire that person. If lupus patients’ disability was recognised, then that would make it much easier for patients to find work and to get any required adaptations patients may need in order to work.
We would also want help obtaining more support from laboratories to help research on new drugs for the treatment of Lupus, which do not produce harmful side effects for the body.
Is there anything you think Lupus Europe could help your organisation with?
We want Lupus Europe to continue working on the social awareness of our disease, making the disease visible and raising social awareness about lupus; a disease that is invisible to many. We need people to understand what it means, and we need people know about it. We want people to understand that we can still be active members in society within the limitations of our disease!
We would like help so we can have access to records of the number of patients and affectations to know the trends in the number of patients in terms of disease activity, co-morbidities et cetera. We don’t know if this exists from a European, versus a national, perspective. We would also like to see a registry of international lupus specialists and the promotion of international medical units so that serious cases can be referred to these units for study, with access to the results.
We think Lupus Europe could help foster a greater relationship between international entities related to the care of patients regardless of where they are in Europe, with points of contact where they can go if there are problems while traveling. Cross border healthcare is a very important issue. What does a lupus patient from Spain do, if they happen to be working in – for example- France and they get a lupus flare? Where are the lupus specialists in that country? How can someone find lupus specialists in another European country? Who should a patient contact in those circumstances?
Also something that is very important is how do we make sure we have a consistent approach to lupus patient care across Europe? We would like to explore the creation of protocols of action for health systems for emergency visits, such as inflammation of the lung, heart, or any other affectation. These generalised protocols should be adopted by the health systems.
Is there any topic/theme/area that you think Lupus Europe should focus on, on something where European collaboration would make sense?
It is important that there is communication on lupus and that we all convey the same message. For example, the World Lupus Day campaign could be coordinated at European level to ensure that the same message gets conveyed across Europe.
Are you aware of the Lupus Europe Member Capacity Building Program?
No. We are a new Board of Directors, and we have no knowledge of it, but it would be interesting that we could be trained to be ambassadors of lupus; to be able to communicate properly and with the appropriate terms about the disease.
Could you tell us a bit about a dream you have as a group?
We hope that increased research on the interesting areas of the disease can eventually find a cure for lupus. We also dream of obtaining greater benefits (not monetary benefits). We dream of having the medical support and the social recognition and support that we need so we can have a good quality of life as lupus patients! We don’t want people to be marked by the disease, consumed or defined by their lupus. We want people to have a good quality of life while living with their lupus, until scientists can eventually find a cure for lupus.