The Cancer Survivor’s Bill of Rights
Written by Natalie Davis Spingarn
The National Coalition for Cancer Survivorship presents this … Survivors’ Bill of Rights to call public attention to survivor needs, to enhance the quality of cancer care, to empower cancer survivors, and at the same time bring greater satisfaction to them and their physicians, employers, families, and friends.
Survivors have the right to continuous lifelong medical care, as needed. The physicians and other professionals involved should make every effort to be:
-Sensitive to cancer survivors’ lifestyle choices and their need for self-esteem, dignity and privacy of the information trusted to them;
-Careful no matter how long these patients have survived, to take symptoms seriously and not to dismiss aches and pains, for fear of recurrence is a normal part of survivorship;
-Vigilant to watch for any long-term and late effects of cancer and its treatment in follow-up clinics and offices;
-Informative and open, providing survivors with as much or as little candid medical information as they wish, and encouraging informed participation but not expecting survivors to manage that care on their own;
-Knowledgeable about counseling and rehabilitation resources
No matter in which setting their care is offered-be it fee-for-service or some sort of managed care system- survivors have the right to quality care emphasizing:
-Informed choice – choice of the setting in which care is delivered, choice of primary physicians and specialists delivering that care, as well as choice of appropriate, effective and safe treatments (including ongoing clinical trials);
-Efficient yet humane management of such unfortunate by products of disease as fatigue and pain…
Appropriate use of hospital and other facilities; wherein cost effectiveness and patient-centered care are balanced…
-Constant respect for survivors’ wishes as to when and how to discontinue treatment should that time arise, including the scrupulous honoring of ”living wills” and similar documents.
In their personal lives, survivors, like other Americans, have the right to the pursuit of happiness. This means they have the right:
-To talk with their families and friends about their cancer experience if they wish, but to refuse to discuss it if that is their choice…
-To be free of the stigma of cancer as a “dread disease’
-To be free of blame for having the disease and of guilt for having survived it;
-To participate in support groups and other survivor support and/ or advocacy activities as they wish…
In the work place, survivors have the right to equal job opportunities. This means they have the right:
-To aspire to jobs worthy of their skills, and for which they are trained and experienced, and thus to not have to accept jobs they would not have considered before their cancer experience;
-To be hired, promoted, and accepted on return to work, according to their individual abilities and qualifications, and not according to “cancer” or “disability” stereotypes, with “reasonable accommodation,” under federal and state law. ..
-To privacy about their medical histories
Since health insurance is an urgent survivorship concern, every effort should be made to assure all survivors decent, affordable coverage, whether public or private, or provided under managed care or fee-for-service systems. This means:
-For employers, that survivors have the right to be included in group health coverage
-For physicians, counselors and other professionals concerned, that they keep themselves and their survivor-clients informed and up-to-date on the dangers of health insurance discrimination…
-For social policy makers, both in government and in the private sector, that they seek both to broaden insurance programs to include diagnostic procedures and treatments which help prevent recurrence and ease survivor anxiety and pain, as well as to lower the unfair barriers often imposed by the accidents of race, minority culture, age, or plain lack of means to pay for adequate health insurance coverage.
In sum, cancer survivors have the overriding right to access quality health care. Implicit in that right is universal access to adequate health insurance coverage. For “quality” becomes an empty word without the means to achieve such coverage. A cancer may not even be discovered. And if it is, care may be sub-optimal, no one will be accountable for it, and the whole society will be the losers.
Excerpt from NCCS’s Cancer Survivors Bill if Rights Copyright© 1999 NCCS