Addressing the long-term problems of survivors is one of the least-developed areas of cancer care. But it’s getting new attention for a good reason: For many cancers, the days when a diagnosis was a death sentence are gone. Today, there an estimated 12.5 cancer survivors living in Europe.
Their lives, however, aren’t necessarily easy. For some, cancer is a chronic disease that needs constant monitoring. For others, their treatments have boosted the risk of new cancers. And as brand-new therapies hit the market, the survivors of today become the research subjects of tomorrow, showing us with their bodies what the long-term effects of these innovations will be.
There are also social factors. Whether it’s casual stigma at work or formal rejection letters from mortgage and life insurance companies, cancer survivors find it hard return to normalcy.
POLITICO’s Global Policy Lab has been looking at ways to ensure treatment doesn’t end when the tumor disappears. In this brainstorm white paper, we lay out the key questions facing policymakers, industry leaders, health professionals and survivors themselves as they navigate long-term care for cancer.
The problem: Oncology treatments are hard on the body, and people who beat their cancers are prone to other issues down the line, from a weak heart to fertility problems and even heightened risks of a new cancer. What’s more, for many new treatments, we don’t know what effect they’ll have on the body years or decades down the line. Yet outside of cancer specialists, health professionals don’t always know how to recognize a late effect of cancer treatment. And cancer survivors sometimes say they don’t feel like they have enough information or motivation to take the best care of themselves.
The question: How can we prevent other diseases and treat the late effects of cancer therapy throughout the course of a cancer survivor’s life?
The problem: Beyond surgery scars and long-term health effects, cancer can leave a mark on survivors’ records that can cause lasting problems, sometimes putting things like mortgages and life insurance policies out of reach. France has implemented a “right to be forgotten” for cancer patients, relieving them of the obligation to disclose their cancer diagnosis five to 10 years after treatment, and other countries, including Belgium, are eyeing similar provisions. But the private insurance industry warns that such measures could lead to a slippery slope and force price increases for everyone.
The question: What’s the best way to protect cancer patients from financial discrimination?
The problem: Returning to work is increasingly viewed as a key part of long-term cancer care, helping patients get back to normal and maintain their self-esteem — not to mention their income. But it does often require accommodations from employers, whether it’s allowing telework, being flexible about part-time hours or buying new equipment. Businesses aren’t always eager to make these efforts.
The question: What are the barriers to getting cancer patients and survivors back on the job, and how can we overcome them?
The problem: As patients transition through the different stages of the treatment process and into long-term care, family and other informal caregivers are often the only consistent presence. These carers pick up an estimated 80 percent of the burden of looking after patients and survivors. The toll on these individuals is heavy. Missed work leads to loss of income, and long hours at the bedside and handling paperwork cause stress and exhaustion. Yet there are few protections for caregivers, or ways to give them the knowledge they need to take care of both their sick loved ones and themselves.
The question: What can the EU, national governments and health professionals do to better support informal caregivers?
The problem: Cancer patients and survivors are emerging as their own best advocates, putting pressure on governments and industry to find new treatments and improve existing ones. However, patient groups often rely on financial support from the very groups they’re trying to lobby, whether it’s sponsorship from drugmakers or grants from the European Commission. That can undermine their perceived independence and blunt their effectiveness. For example, the European Parliament moved to block patients from parts of a new EU-level process for evaluating the value of new medicines, out of fears that it would be a backdoor route to industry influence.
The question: How can policymakers support patient advocates without creating a conflict of interest?