by Arthur Caplan, Medical Ethics, NYU School of Medicine
The opposition to Federal Right to Try legislation is not as vocal as it should be. After all, who wants to oppose the right to try for those dying from cancer and other ailments? Not Vice President Mike Pence who has been promoting a Federal law for months https://www.bloomberg.com/news/articles/2017-02-08/pence-piles-on-drugmakers-with-push-for-right-to-try-regulation.
by Clarissa Schilstra, CKN Editor
Over the past few months, I have been working as a health coach in a program for Adolescent and Young Adults (AYAs) with chronic illness, including AYA cancer patients and survivors. My job has been to help them work through limitations imposed by their illnesses, as they try to reach important goals they have set out for themselves. After a few weeks of coaching, I and the other coaches I work with, noticed a trend: every single one of the patients being coached through the program felt uncertain or confused about how to communicate with their health care providers (HCPs). This made them frustrated or nervous on more than one occasion, and those communication struggles often left them feeling like they did not have full control over their care.
by Lydia Makaroff, Director of the European Cancer Patient Coalition
Today’s cancer treatments are becoming increasingly complex. While the idea behind surgery is relatively simple – cut out the tumour – many of the new cancer treatments are based on more complex strategies. The complexity of these approaches can leave some people with cancer feeling left behind – as if everyone in the hospital room understands their treatment except them. This can often mean that people with cancer are not able to act as equal and informed partners in their health care.
by Danielle Cloakey, Childhood Cancer Survivor and Advocate
Imagine for a second that what tried to kill you as a child still runs rampant today, wreaking havoc and destroying lives. Can you see it? Welcome to my reality. I am not arguing that cancer is not a monster, because it is. It crept into my life a few months after my first birthday, and its greedy fingers have not yet let go even today, 34 years later.
by Liz Margolies, LCSW, Founder/Executive Director National LGBT Cancer Network
Lesbian, gay, bisexual and transgender (LGBT) cancer patients (and those who love them) experience extra challenges after diagnosis and continuing many years post treatment. There is research to show that LGBT cancer survivors report lower satisfaction with their cancer care than heterosexual survivors and these differences extend to their quality of life following treatment. Lesbian and bisexual cancer survivors are over twice as likely to report fair or poor health post treatment, compared to heterosexual female survivors. Gay, bisexual and transgender men have more psychological distress after surviving cancer than their heterosexual and cisgender peers. These studies are published but not well known, reflecting the invisibility of LGBT people within the healthcare system. Last week, a huge change occurred in LGBT visibility and a professional commitment to address these health disparities: the American Society of Clinical Oncologists (ASCO) released a position paper, calling out the impact of discrimination on LGBT people in society and within the healthcare system. More important than simply listing the additional difficulties LGBT cancer survivors face, the position paper recommends multiple actions that will correct the problems, with a focus on those that oncologists can take the lead in bringing about. ASCO Issues Recommendations for Reducing Cancer Disparities among Sexual and Gender Minority Populations
by Marjorie McGibbon, RN BScN, Paediatric Oncology Patient Navigator
Seventeen years ago, I decided to make a career change and become a pediatric registered nurse. I invited my boyfriend (now husband) to my apartment and proclaimed that “I needed to talk.” He looked at me skeptically, knowing that those words could potentially be ominous. “Don’t look so serious,” I said. “I just want to change my career, not my love life!” He chuckled out a sigh of relief. But when I asked him seriously what he thought of my idea to switch from a long term goal of athletic therapy into pediatric nursing he simply looked at me and said, “Of course you should do it. You’d be a natural!”