BEYOND COVID-19 – what does the future hold?

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4 May 2020

The Covid-19 pandemic is placing immense pressures on people affected by rare diseases, with many struggling to access the care and support they need.

Having a rare disease can place a person at increased risk of contracting Covid-19 and/or at increased risk of experiencing severe infection. The pandemic has left many families isolated and struggling to access support as well as ongoing care and treatment for their condition, putting lives at risk. There is a great need for clear and reliable information and support.

Genetic Alliance UK launched its Covid-19 hub in early March, and we have been hosting Covid-19 “safe space” meetings with organisations on a weekly basis. Through these meetings and through our online communities, we are hearing about the immense and escalating practical, emotional, social and financial impacts of Covid-19 for people affected by rare diseases and their families. We desperately need more support from the government for rare disease patients and for the charities and voluntary groups that support them.

Data released today from an ongoing study conducted by Eurordis has given an early indication of the extent and severity of the wider impact of Covid-19 on rare disease patients and their families and carers.

Here in the UK, since the beginning of the pandemic:

  • 7 in 10 rare disease patients have had their care interrupted, which is judged by 2 in 10 to be life-threatening
  • 4 in 10 of those who need surgery or transplant have had their operations postponed or cancelled
  • 7 in 10 report cancellations in appointments for rehabilitation therapies

Of those in need of hospital care:

  • More than half have avoided going to hospital for fear that they might contract Covid-19
  • 4 out of 10 report that they have been told not to go to hospital should they become unwell for reasons other than Covid-19.

For those in the UK who need home care, such as nursing or the care of a personal assistant, lack of personal protection equipment, such as masks and gloves for the person providing the support has resulting in withdrawal of care, with (for those normally receiving home care):

  • 1 in 4 reporting that they have experienced a reduction in care
  • 1 in 4 reporting that they have lost their access to home-care entirely.

The data from this survey is extremely sobering. Yet, despite this unprecedented crisis for the rare disease community, it feels very much as though people affected by rare diseases, and the third sector organisations that work with and on their behalf, have been largely overlooked.

The majority of rare disease charities have seen their income plummet as a result of Covid-19 at precisely the time when the pressures on rare disease patients and need for support have rocketed. Very few, if any, stand to benefit from the new funds released to support charities.  It seems inevitable that many will be lost to this financial crisis with knock on effects felt by patients, families, health and social care, industry and research. These organisations are a vital part of the ecosystem, and if left unchecked, the impacts of the impending losses will be great and long-lasting.