Joint letter to the government from the “Together for Healthy Marrow Alliance”
12th July 2021
Today the following letter was sent to the health ministers of the UK. PNH Support is a member of the “Together for Healthy Marrow Alliance”
12th July 2021
Professor Chris Whitty, Chief Medical Officer, England
Dr Frank Atherton, Chief Medical Officer, Wales
Dr Gregor Smith, Chief Medical Officer, Scotland
Dr Michael McBride, Chief Medical Officer, Northern Ireland
Dear Chief Medical Officers,
We are an alliance of six rare disease charities specialising in acquired and inherited rare bone marrow failures. We provide support, information and guidance for people affected by extremely rare and complex conditions, many of whom are immunocompromised.
We write to express our grave concerns about the current government plans to lift Covid-19 restrictions on 19th July. This news has resulted in overwhelming uncertainty and fear in the rare bone marrow failure communities we represent. Following the government announcing on 5th July that restrictions will be lifted, our organisations have been inundated with calls from our communities, with one of our organisations experiencing an 800% increase in helpline calls from anxious patients. The high levels of anxiety and stress this announcement has caused has resulted in a devastating impact on people’s mental health.
We strongly urge the government to delay the easing of restrictions until:
• the number of positive Covid-19 cases are decreasing,
• there is greater up-take of the vaccination programme; and
• further research can be conducted into vaccine efficacy and protection levels for people who are immunocompromised
There has been a lack of clear government guidance for the immunocompromised, which has compounded the uncertainty and fear faced by our rare bone marrow failure community. Following the announcement that restrictions would be eased, people in our communities are now facing increasing pressure from workplaces to return to ‘normal’, at a time when infection rates are soaring, and the levels of protection provided from the vaccine in those who are immunosuppressed is still unclear*.
Being diagnosed with a rare disease is overwhelming and challenging at the best of times, but during the Covid-19 pandemic, the stress and anxiety experienced by those who are clinically extremely vulnerable has significantly worsened. Our communities have experienced continued disruption and delays in their treatment, reduced access to help and support from healthcare professionals in managing their conditions and negative physical and mental consequence as a result of shielding.
Rare disease patients in our community feel invisible in government policy, as evidenced below:
“Last week I had my first socially distanced contact outside with a friend since last summer, which was great. I was looking forward to seeing more friends. I now feel it’s going to be too dangerous post-19 July. I live alone and am distraught that I’m going to have to totally shield again. I’m worried about how my mental health will cope. Other people continuing to wear masks and socially distance in some public places like transport, shops and supermarkets help to protect people like me. At the moment it feels like the government have thrown us under the bus.”
Kim, rare bone marrow failure patient
For those members of our community returning to work, removing safety measures like masks and social distancing turns their workplace into an unsafe environment. We do not believe that excluding these people from the workplace or from public places is beneficial for the economy. If the government continues with the current plan to ease all restrictions after the 19th July, daily life will be impossible for people affected by rare bone marrow failure who are immunocompromised.
We urgently call on the government to:
1. Reconsider the timeline for easing restrictions in light of the evidence of rising positive Covid-19 cases.
2. Require masks to be worn on public transport and in enclosed public spaces and maintain the current social distancing rules, to enable people affected by rare bone marrow failure who are immunocompromised to contribute to rebuilding the economy.
3. Issue clear and consistent guidelines that outline the steps that people who are immunocompromised should take to protect themselves from Covid-19 at each stage of the government’s plan.
4. Outline the actions which will be taken to mitigate the mental, physical and financial impact of the Covid-19 pandemic on those who are immunocompromised and include them in any long-term Covid-19 recovery strategy.
We believe that if these necessary steps are not taken, it will have devastating and long-term consequences for our rare bone marrow failure communities and families.
Signed on behalf of:
Stevie Tyler, Chief Executive Officer, The Aplastic Anaemia Trust
Leisa Batkin, DBAUK Chair, Diamond Blackfan Anaemia
Dr Noémi Roy, Trustee, Congenital Anaemias Network
Dr Jane Paxton, Scientific Advisor, DC Action
Dr Hilary Longhurst, Medical Advisor, DC Action
Bob Dalgleish, Chairman, Fanconi Hope
Maria Piggin, Chair, PNH Support
*Study analysed data from people who received organ transplants and an mRNA COVID-19 vaccine-the two currently available in the US of that kind are made by Pfizer and Moderna-and found that only 15% had antibodies to the virus after the first vaccine. After the second dose, 54% had the antibodies. (Boyarsky BJ, Werbel WA, Avery RK, et al. Antibody Response to 2-Dose SARS-CoV-2 mRNA Vaccine Series in Solid Organ Transplant Recipients. JAMA. 2021;325(21):2204–2206. doi:10.1001/jama.2021.7489)