The COVID-19 pandemic continues to affect the everyday lives of millions of people around the world. We are all reviewing the way we live, work and care for loved ones in extraordinary circumstances, but what is it like to be living with the additional burden of a rare, severe and chronic health condition? We interviewed three patients, one of them a regional Patient Association Group Head, living with ANCA-associated vasculitis (AAV) to find out.
What is AAV?
AAV is a group of rare, severe autoimmune diseases affecting small blood vessels in different parts of the body, resulting in damage to organs such as the kidneys, lungs, heart, nervous system, nose, eyes, sinuses and skin.
Hearing directly from patients
Based in Germany, Hermann, Martina and Meresa are all patients and active members of AAV patient advocacy groups, which Vifor Pharma partners with. We interviewed them over Skype and listened to how they deal with this condition and the impact it has on their lives.
The lives of people around the world are currently affected by the COVID 19 virus pandemic – how are you feeling during this time?
Hermann: I feel insecure because I don’t know how my body would react, and what the risks are if I am infected with COVID-19. At the moment I am in remission and I don’t know if this would remain stable, whether my AAV would flare up again or how badly my lungs could be affected.
Martina: I respect the risks of COVID-19 but I am not afraid. I am at home with my two children and we leave the house just for necessities. Since there are no facts or numbers on patients with chronic conditions and the effects of COVID-19, there is a lot of uncertainty on the topic. Unfortunately, there is too little information.
Maresa: I also feel insecure. I had a severe episode of AAV a year ago, in which my lung was severely damaged. During that time I was also on a ventilator. The social restrictions and staying at home is very difficult for me, because I went through all this a year ago and now I want to look forward to a better quality of life.
The majority of people living in Europe have been advised to stay at home and avoid personal contact with others – what does a typical day now look like, and how do you maintain contact with family, close friends and support groups?
Hermann: I am avoiding personal contact with others and only use digital media, such as WhatsApp – and video to communicate with my children, grandchildren and with my friends.
Maresa: I go out a lot to exercise, alone of course. I read a great deal, also about COVID-19. I avoid contact with others, except with my sister and boyfriend. Unfortunately, I am not allowed close contact with my mother or father at the moment. Especially my father, as he is often in close contact with others in his professional life. I talk on the phone with my friends and family and in the evening I connect with friends via video conference or virtual chat. I keep in touch with the AAV support group via our Facebook group.
Martina: Keeping a regular schedule and spending time with my children has a very positive effect on me. I often communicate via WhatsApp or Skype, and from time to time, I meet friends to go for a walk (keeping to social guidance measures). Unfortunately I can’t see some of the friends I used to meet regularly for now, because they work in the hospital and have contact with COVID-19 patients.
Was it more difficult than usual to make an appointment with your doctor/or to keep regular appointments, or did your doctor consider a break in treatment if necessary?
Hermann: For me, treatment continues normally. Under no circumstances will the medication be changed, as the flare-up of AVV risk is higher than the COVID-19 risk. I’ve still had specialist appointments, such as with an ophthalmologist. Doctors haven’t cancelled appointments either, they are held with the appropriate precautions.
Martina: I’m in the middle of a relapse and I’ve been visiting the nephrology department, and emergencies are still accepted. As it is a separate wing in the hospital and well shielded, I am not afraid to go there. It’s a little bit different for my appointments with the rheumatologist, so I’m currently communicating with her via email, because I don’t want to go to the main hospital.
Maresa: My treatment has not been interrupted. For the protection of patients (not for capacity reasons), one hospital appointment has been over the phone, and two appointments were postponed until May.
Are you worried that medical care adapted to your needs is at risk?
Hermann: Everything is continuing as planned, including the laboratory appointments and consultation hours. The medication provisions are secured. I also have enough disinfectant, as it has been part of my routine for 10 years to wash and disinfect my hands regularly. I am a little worried about potential bottlenecks in medical care, and that I won’t get the right diagnoses because of COVID-19, but at the moment I’m trying not to think about. I will deal with it if it happens.
Martina: I am still waiting for my treatment. I was scheduled to receive immunosuppressant – Rituximab in June. I had some problems to get the Cotrimoxazole through my pharmacy – a broad-spectrum antibiotic used for lung disease. It is currently difficult to get because of COVID-19. For AAV patients this is used as prophylaxis. I’m having to buy drugs from other manufacturers. I was able to get my medication from Poland as I’m originally from there and still have good contacts with doctors, but even this is not so easy now. Medication cannot be sent by mail and the borders are closed. Disinfectant is easy to get hold of and as this is part of my routine, face masks are more difficult to find.
Maresa: I also had problems to get the broad-spectrum antibiotic, but otherwise I have enough supplies of medication and disinfectant. I’m not worried the supplies will run out at the hospital.
Do you feel supported? If not, what would you like to see/receive more of?
Hermann: I would like more information about the effects of COVID-19 on people with autoimmune diseases and rheumatic diseases. It would be important to know whether there is a connection between immunosuppression and COVID-19, and its course. It would give us more certainty if we had more information about patients with an autoimmune disease who have already undergone COVID-19, how high the proportion of this group was and how the disease progressed. Given the current situation, I don’t want to ask the doctors either as they are already reaching their limits.
What advice would you give to others who are dealing with a chronic disease during this time?
Maresa: My advice is to stay at home and accept help from others. My friends and family go shopping for me, for example. We must all pull together now.
Hermann: I advise people to isolate. I only live with my wife and avoid close contact with children and friends. It is not clear whether this virus can cause irreversible damage. I will voluntarily stay in isolation for several months and pay attention to distance and hygiene.
Martina: I’m in a bit of a dilemma – when schools and the childcare opens again, I can’t isolate myself completely. Should I pick up my children wearing a facemask and gloves?For now I’m staying positive – I enjoy the time with my children, I have no appointments and no stress. Time passes by slower now. The important thing is not to put yourself under psychological pressure, always think positively.
You are all active members of patient advocacy groups online and in your local areas – how has the pandemic affected those groups and other patients who are part of the community?
Hermann (Leads a patient self-help group at the University Medical Center Mainz):
In March our meeting was cancelled by the self-help group at the University Hospital Mainz. I am still in constant contact with the group. The conversation takes place via email, phone calls or virtually, but I miss meeting in person. The members share the same concerns as I do. I try to keep out the uncertainty from conversations. We have a strong feeling of belonging together.
Martina (Admin Facebook group self-help group Vaskulitis e.V. with 1,900 registered members and 800 Facebook Group Members): At the moment I am on my mobile phone constantly, as I receive many calls from members of the self-help group. They hope for better information and instructions from us, because we are better connected to the doctors. Our patient advocacy group chairman, Klaus, receives up to 46 calls per day. This is a state of emergency for him.
What advice would you give to the authorities and leading physicians during this pandemic?
Maresa: I would like to see more testing in our country, as the number of unreported cases is very high.
Martina: There should be more testing. However, as the tests are in short supply there is no point in testing everyone, the tests should not be wasted.
Hermann: I’m with Martina on the testing. The authorities are doing a reasonable job. The social distancing should be better controlled. A broader statistical analysis of autoimmune diseases broken down to the individual subgroups would be desirable.
If you want to learn more about ANCA-associated Vasculitis then please visit the available digital platforms and do not hesitate to reach out to the avacopan team
www.understandaav.com for HCPs outside of the US
www.myancavasculitis.com for Patients and Carers or anybody effected by or interested