This month we are pleased to share the story of ovarian cancer survivor, Maggie Heim. Maggie's experience with a recurrence and the shortage of the chemotherapy drug Doxil prompted her to start a blog and non-profit, Help Keep a Sister Alive.
Helping to Keep Sisters Alive
In July 2011, Maggie Heim had her first recurrence of advanced ovarian cancer, which was originally diagnosed in 2009. Her doctor recommended using intravenous Doxil and carboplatin to treat the recurrence. Unfortunately, no Doxil was available at that time and was still not available a month later when she started treatment with carboplatin only. While looking into the Doxil shortage, Maggie learned that many other drugs used for cancer patients were also unavailable or in serious shortage. So she and other ovarian cancer patients formed an advocacy group, which routinely engaged with the press to push for the end to the pervasive drug shortages affecting cancer patients. She also started writing a blog called Help Keep a Sister Alive to advocate for the end of the drug shortages. In February 2012, the FDA responded to the outcry against the unavailability of Doxil by permitting the importation of a generic version because the patent holder simply could not get Doxil manufactured under safe conditions in the United States.
Maggie had another recurrences of ovarian cancer in June 2012 and went into a clinical trial instead. She has been undergoing treatment off and on for most of the five years since she was diagnosed. She was also diagnosed with breast cancer in the spring of 2013. Throughout this time, until July 2014, she was senior vice president, legal at Sony Pictures Entertainment in Los Angeles.
Maggie is currently the Founder and CEO of the nonprofit organization, Help Keep a Sister Alive (HKASA) whose website (helpkeepasisteralive.org) assembles, in one place, information to help patients, survivors, caretakers, friends and family cope with ovarian cancer and other cancers affecting women. HKASA’s mission is to empower patients and caregivers by providing information relating to many different aspects of the cancer experience and support throughout the cancer experience. It is a partner member of the Ovarian Cancer National Alliance.
With a research PhD in Psychology (1981) and a JD from UCLA (1984), Maggie has unique experience to oversee HKASA. Her scientific research background and 30 years of practicing law give her a special insight into providing accurate and useful information about ovarian cancer.
Research shows that patients who advocate for themselves have better outcomes. Unfortunately research also shows that most patients feel they do not have the required information to talk to their doctors about treatment and clinical trials. HKASA’s mission is to empower patients and caregivers by providing reliable information in one location on the internet relating to many different aspects of the cancer experience and support throughout the cancer experience. With this information available through the internet, patients hopefully will experience that better emotional and survival outcomes.
HKASA's main program is the website www.helpkeepasisteralive.org. A constantly evolving resource, the website currently contains the following portals to provide users with the most current information:
- HKASA BLOG
- OVARIAN CANCER BLOGS
- FOR NEWBIES – information for those newly diagnosed with ovarian cancer-e.g. how to find a doctor, symptoms of ovarian cancer
- FINANCIAL INFORMATION – list of sites addressing Social Security disability (including compassionate allowances), Medicare, Affordable Care Act, General Information about Financial Assistance, Prescription Drug Assistance, Travel to Treatment Assistance
- CLINICAL TRIALS – list of sites to help search for clinical trials, Other Information about Clinical Trials and Clinical Trial Coverage Under the Affordable Care Act
- COMMUNITY SERVICES – list of sites in certain states, nationwide websites and websites concerning palliative care
- CANCER RESEARCH – information about latest ovarian cancer research
- DRUG SHORTAGES- information about current shortages affecting cancer patients
- ENVIRONMENTAL ISSUES - list of research connecting cumulative environmental impacts and cancer, including information on particularly toxins and soon how the impacts of climate change affect health outcomes for existing and future cancer patients
- CANCER AND WORK- list of resources on how to address workplace issues while undergoing treatment; how to apply for worker’s leave and compensation; labor rights for patients and caretakers, etc.
- OVARIAN CANCER SUPPORT GROUPS - provides an up to date list of support groups for ovarian cancer patients and caretakers.
The constituents HKASA serves are ovarian cancer (and other cancer) patients, caretakers, family and friends, including a sizable millennial population which we believe are the children of patients looking for information to help the patient.
HKASA plans to add more legal content, clinical trials information, research content and a chat function about subjects on the website in 2015 by consulting and partnering with experts. HKASA also will expand its coverage for BRCA positive people and entries how to identify and treat ovarian cancer.