Patient groups fight to address the information gaps on Covid-19 vaccines
As patients with chronic illnesses searched for vaccine information relevant to their own situation patient groups stepped in to help.
Patients with underlying health problems have faced additional uncertainty throughout the Covid-19 pandemic, feeling not only more vulnerable to the impact of the virus, but also isolated and experiencing disrupted treatment and care.
Patients approached the good news stories of the development of Covid-19 vaccines with some caution. For many of them there were unanswered questions and unknown consequences to consider. Across disease and therapy areas it was still unclear which vaccine was best suited to certain conditions; if the vaccine would react badly to specific medications patients were on; or if the vaccine would make their crucial treatments less effective. For diseases like dementia, there was the additional question of mental capacity: deciding to have the vaccine or not.
This blog looks at a handful of (the many) examples where patient groups stepped in to give informed guidance and advocate for better information and action for patients.
From Belgium: the European Cancer Patient Coalition
In 2021, the European Cancer Patient Coalition (ECPC) published a resource that detailed vaccination guidelines for cancer patients. The resource was compiled by an international oncology panel of 51 physicians from 33 countries and gives patients an accessible way of understanding the vaccine through the lens of their illness and treatments. The guidance covers the optimum time to be vaccinated according to different cancer treatments and recommendations on what cancers should be treated as a priority for vaccination.
The ECPC is working to keep their information up-to-date as the pandemic unravels. The organisation notes that: ‘Since there are limited data on the effects of Covid-19 vaccination in patients with cancer concerning the efficacy and duration of immunity, as well as the interactions with cancer therapies, information and guidance on cancer patients’ vaccination will result from the experience unearthed by each country’s vaccination programmes and real-world data. All information is empiric and increases with time.’
(Source: European Cancer Patient Coalition, 2021.)
From the US: NORD (National Organization for Rare Disorders)
Some 25-30 million Americans currently live with a rare disease (National Institutes of Health, 2021) which is defined as disease or condition affecting fewer than 1 in 2,000 people within the general population (Orphan Drug Act, 2013). There are as many as 7,000 known rare diseases (National Institutes of Health, 2021). However, as patient populations are so small, there is insufficient knowledge or clinical research into how Covid-19 impacts those with a particular rare disease. Many patients remain unsure as to whether their condition puts them at elevated risk for severe Covid-19 and worry whether they should be prioritised for vaccination—in the same way as patients with more common chronic diseases.
In February 2021, NORD, along with The ALS Association, Muscular Dystrophy Association, and Cystic Fibrosis Foundation, sent a letter to Centres for Disease Control and Prevention (CDC) Director, Dr. Rochelle Walensky, and the Advisory Committee on Immunisation Practices (ACIP) regarding the lack of clear vaccination prioritisation guidance for rare disease patients. NORD urged the CDC to clarify their position and encourage US states to allow patients with rare diseases to receive the vaccine at an appropriate time.
(Source: NORD, 2021.)
From the US: National Multiple Sclerosis Society
Disease-modifying therapies (DMTs) are a group of treatments for people with multiple sclerosis which help reduce how many relapses someone has and how serious they are. However, these treatments affect the immune system. Because vaccines work by triggering the body to produce an immune response, it was suspected that some DMTs could reduce the effectiveness of Covid-19 vaccines (MS International Federation, 2021).
In response to this concern, the US-based National Multiple Sclerosis Society consulted a group of researchers, medical experts and partner organisations to review the evidence and safety of Covid-19 vaccines for people with MS. Following the consultation and examining the data available, in November 2021 the patient group offered guidance regarding Covid-19 vaccination for people on MS disease modifying therapies (DMTs). This guidance includes advice to get fully vaccinated at least four weeks before starting a specific medication to ensure both are effective, and if already taking the medicine, to wait 24 weeks or more after the last dose before getting the vaccine.
(Source: US National Multiple Sclerosis Society, 2021)
From the UK: Mencap
In 2021 Mencap, a UK charity dedicated to supporting people with a learning disability, their families and carers, adapted key publicly-available communications on the Covid-19 vaccines so that they were accessible to those with learning disabilities. Along with the ‘Easy read guide’, Mencap also ran an ‘Ask an expert’ session in February 2021 where a member of the helpline team joined the online community to answer questions about the vaccine. The thread has also been made available on a webpage for those who didn’t make the session.
(Source: Mencap, 2021.)
From the UK: the Alzheimer’s Society
The decision to have a Covid-19 vaccine is one that belongs to the individual being offered it. These decisions become far more complex when an individual has declining mental ability. Factors such as a person’s mental capacity or the wishes of loved ones come in to play. Ideally, the best outcome is one with which the patient is most comfortable. Given the difficulties involved, the Alzheimer’s Society stepped in to provide a guide on ‘Consent to coronavirus (Covid-19) vaccination’. The guide includes real life case studies of court cases relating to the vaccine and dementia, along with helpful links and a chat box for further questions.
(Source: Alzheimer’s Society, 2021.)
The variety of support offered by patient groups during the pandemic has been impressive.
Patient groups worldwide continue to be a consistent, trusted source of information in the fast-changing and uncertain environment of the pandemic. In the general absence of condition-specific information from health authorities and the life-sciences industry, groups continue the fight for clearer, specific guidance for their patient communities.
If you are a patient group or health campaigner, look out for opportunities to share your views through PatientView surveys, including our current and latest survey about the effectiveness of pharma in supporting patients and patient groups during the Covid-19 pandemic: