OPEN LETTER TO ALL CANCER PATIENT ADVOCATESv1.0
#COVID19 is ravaging through our societies. We already see how it affects cancer patients. Here are my thoughts.
In the last weeks, we have seen in our Melanoma community that
- follow-up appointments and control scans are postponed
- patients are switched to treatments that are less effective but have fewer side effects, can be taken orally instead of IV or are completely taken off treatment
- clinical trials are closed, leaving patients whom all other therapies have failed out off options
- Stage 4 cancer patients are not being given permission to self-isolate at home 'because they had no COVID19 symptoms'
- some patients on forums do not recognise the need to self-isolate and feel that 'cancer was already enough to worry about'
- a high level of anxiety and uncertainty
- rampant levels of incorrect or unhelpful information
And we have no reason to believe that this would be different for other cancer communities.
We as cancer community are one of the communities at particular risk from COVID19 because- cancer itself weakens the immune system, especially in the advanced stage. We do not know by how much and what the differences between the different stages and cancers would be, but it is safe to assume that this is a risk.
- some cancer therapies, like chemotherapy, additionally weaken the immune system, making these patients particularly vulnerable to COVID19 infections.
- the capacity of our healthcare systems is limited, and in particular the number of ICU beds differs considerably between countries. In case of shortage, it will come to triage situations where respiratory ventilators will be allocated to those patients with the highest likely benefit. Societies discuss this more or less openly (here in Italy and here in Sweden where there announce upcoming triage even before the pandemic has hit the country), so expect it to be a given and a cancer diagnosis will always weigh against our people.
- cancer patients on drugs are particularly affected by disruptions to the supply chains
- the general disruption to healthcare, society and economics means that cancer patients are not only likely to receive suboptimal care during the next few months but also after the end of the pandemic. Limited societal resources will also mean more limited healthcare resources and many of us have already struggled with access to innovative therapies prior to COVID19.
In a situation where the personal risk to the individual is high and the chances of receiving help by the healthcare system are uncertain, keeping cancer patients out of way's harm is the only possible way to protect them.I believe that it is on us as cancer patient advocates to act now. Cancer patients trust us because they know we care. We have large networks, numerous relationships and established communication channels within and outside the cancer community. We know how to educate patients. We have experience with healthcare systems, support structures and know how to find our way. We have seen what works in healthcare and what doesn't. We have see the good, the bad and the ugly. The fact we are still here means that we believe that change is possible. But by now, we are realists and no longer naive. We are connected with each other, we are used to remote work in international collaborations and we know how to use social media. We have lost the fear to speak up, the fear to be seen that is holding back so many right now, a long time ago. And if there is something we as patient advocates have understood then it will be that it is futile to wait for others to solve our problems.
It is on us to make sure that our communities are well-informed. We need cancer patients to understand the need to self-protect. And we need to find ways to educate and to keep fake news at bay.
It is on us to push for protective measures for cancer patients to put in place in our countries, to ensure patients have sufficient drug supply and to support our oncologists.
At the same time, we are not only victims, we are citizens of our countries and members of our societies, so we all need to do our bit to make sure everyone gets through this. So while we need cancer patients to protect themselves, we also need them to protect their communities, obviously in ways that do not put themselves at risk. Many small businesses do not have the necessary reserves to get through this crisis, so if we all want to go back to our local gyms, bakers, restaurants and hair dressers, we better find ways to support them now.
While cancer management will be affected short-term, cancer patients will still suffer when everyone has gone back to normal. We know that rationing in healthcare is real. The harder our societies are hit economically, the more we will struggle in cancer once everyone else has gone back to normal. So we should now support strategies limiting the impact of #COVID19 on our societies. We need smart testing/ isolation/ social distancing strategies and effective policies.
And we should not forget that cancer patients are not the only patient group at particular risk. Other patient groups face similar issues, so it is time to reach out and to collaborate. While cancer is what we know best, that is no excuse not to care about others who face similar problems.
Today, we have a knowledge advantage over many others who are just waking up. We already know that one cannot only rely on 'the system' to solve all problems. So let's use your knowledge and networks, share learnings and resources to not only keep cancer patients but everyone safe.
Please add your name, organisation and country in the response field below in support, share this Open Letter with your colleagues, comment, add. And then- reach out, we are just one of the groups that are particularly at risk from #COVID19, and let's all get to work.
And above all: BE SAFE and hope to see you again soon IN REAL.