Society needs to ensure that cancer survivors can get their lives back
Survival rates of cancer patients have increased impressively over the years due to early diagnosis, innovative drugs and integrated therapeutic strategies combining chemotherapy, surgery and radiotherapy. Long term survival and cure are now common for children with leukaemia and patients with Hodgkin’s lymphoma or testicular and breast cancers.
Success creates new challenges. Cancer patients become cancer survivors who want to return to a normal life, with good quality, appropriate insurance, and gainful employment. Yet these survivors are frequently excluded from insurance, mortgages and jobs. The legal framework for research and regulations concerning data protection and privacy creates roadblocks to the need for understanding of the issues facing this rapidly increasing population.
Life after cancer may be compromised by delayed side-effects such as cardiovascular complications, second malignancies, cognitive or other morbidities, chronic fatigue and partial disability. Long term follow-up is required to allow researchers to understand these effects. Society still needs to respond better to the fact that cancer survivors face discrimination in seeking work, education and insurance.
There is growing recognition that cancer treatments affect many patients not just mentally and physically, but also socio-economically. There is the start of discussion not simply among patients and caregivers but also policy makers, bankers and insurers.
Society often still views cancer as a fatal disease, despite the progress in treatment and the greatly increased number of survivors. This misunderstanding contributes to exclusion of cancer survivors from, as aforementioned, insurance, mortgages and employment. This is unjust. Patients who have won the battle against cancer should not face discrimination.
Companies often consider employees diagnosed with cancer to be a risk. They may lose career options or be denied promotion to leadership. They face not just health concerns but also unjustified financial consequences.
Some countries are beginning to respond. In Belgium, a law to take effect in January next year is designed to assist people with chronic illnesses to obtain mortgage insurance. Insurers will be required to justify any refusals. Any rise in premium cannot exceed 125 per cent of the standard rate, with the additional amount covered by a compensation fund.
In The Netherlands, the house of representatives has accepted an action plan to aid cancer survivors in the workplace. The government will take on the employer’s risk as long as the cancer survivor is not declared cured by their oncologist. The minister of employment and social welfare has begun talks with insurers about the “insurability” of cancer survivors after recovery and especially after cure.
In France, the AERAS convention of 2011 provides access to credit and insurance for patients with serious diseases.
Some patient advocates are trying to help patients cope with employment and financial problems. One example is oPuce, a Dutch organisation that helps cancer survivors regain access to the job market.
The financial stress means survivors often reach their maximum borrowing limits. Banks could be important partners in helping survivors continue a normal life.
In Belgium, KBC bank provides both financial as well as logistical support to the VLK, the Flemish league against cancer. Other institutions in the country run programmes in co-operation with welfare organisations to help individuals confronted with an unexpected crisis.
Even taking a holiday can become a problem. To provide travel insurance, an insurer must think differently. If mechanisms were co-ordinated across Europe, actuaries could have access to more comprehensive data on risk, allowing more insurers to offer affordable cover.
Confidentiality presents obstacles. In the United Kingdom, when insurers investigate claims, privacy rules often block the process, yet quick access to medical data can prevent future questions and exclusions.
The confidentiality of patient data is rightly a concern of society. Yet safeguarding medical information is compatible with the collection of anonymised data to identify problems affecting groups of cancer survivors. Research using such pooled data is needed to establish the problems facing cancer survivors. As the EU debates new privacy rules, it is imperative that the needs of confidentiality are balanced with those helping advance research.
(by Françoise Meunier, Director General of EORTC, the European Organisation for Research and Treatment of Cancer)
Source: Financial Times, 26 September 2014