Until scalp cooling technology came to the U.S. just a few years ago, many cancer patients didn’t have a choice - going bald was the only option. Now, patients undergoing certain chemotherapy regimens have the option to try to preserve their hair during treatment, by either renting “cold caps” or receiving treatment at a facility that provides access to FDA-cleared cooling devices. Preserving hair during chemotherapy has the potential to ease a variety of patients’ concerns and improve quality of life (e.g., reduced stress, managing how they share their diagnosis and treatment in their personal and professional lives).
Even with health insurance coverage, a cancer diagnosis and treatment comes with unforeseen and often bank-breaking expenses. We want to reduce the barriers to "cold capping" by providing financial assistance to patients who want to keep their hair but would otherwise not be able to afford to use this technology. Depending on the cold cap therapy, it can costs patients anywhere from $250 to $500 per infusion.
We believe that the choice to prevent hair loss should not be dependent on financial ability. Our aim is to ease - if not lift entirely - the financial burden for cancer patients who want to keep their hair while going through treatment.
Liz Lord, Executive Director
I am a breast cancer survivor and successful user of cold caps. Diagnosed in November 2016, I faced four rounds of chemotherapy that promised to cause me total hair loss. With my life in a state of upheaval - and having lost my breasts to a bilateral mastectomy - I needed some normalcy. I needed to feel and look like me. I found that normalcy through hair loss prevention. During chemotherapy and in the months that followed, my physical appearance did not change. This allowed me to go about my life, both personal and professional, without the physical manifestation of cancer. For me, keeping my hair during cancer treatment was an essential part of my battle and recovery. Here's an article I wrote that further details my experience with and perspective on cold caps.
While I was fortunate to have the financial resources to cover the cost of cold caps, many patients do not. The cost can run as high as $2,500 depending on the number of infusions. Even patients with health insurance face covering this expense out-of-pocket. Most insurance companies don't consider cold caps "medically necessary" in order to prevent hair loss. Until that day comes, patients will continue to face a hefty financial burden to prevent hair loss.
When I'm not thinking about and working on Cold Capital Fund, I am a realtor working in the Northern Virginia area and a mom to my two young kids.
Tiziana Barrow, Board Member
Tiziana has 20+ years of experience in High-Tech. Her career has bridged the client and agency sides of the industry, helping to attract, sell and retain loyal customers for businesses ranging from startups to the Fortune 100. Passionate about building strategies, innovative campaigns and the international teams that thrive to deliver, she is very much a change agent marketer who finds satisfaction in producing exceptionally high-quality results.
With several successes in technology and entrepreneurship, Tiziana has been part of building and growing startup companies, including Symantec, the industry’s most popular antivirus software provider and Eloqua (prior to the Oracle acquisition), a marketing automation platform.
Tiziana joined Cold Capital Fund after successfully saving her hair thanks to the use of cold cap. As part of the Cold Cap Capital Fund team, her desire is to help and empower women undergoing cancer treatment to insure access to the latest treatments and technology.
Christie Mangir, Board Member
After 10 years of providing strategy and organization development consulting to federal agencies, Christie became a full-time cancer fighter in May 2016, when she was diagnosed with breast cancer. Through her experience with chemotherapy, targeted therapy, surgery, and radiation, she was inspired to create tools to improve patients' treatment experience and founded a digital health company to promote digital symptom monitoring. Christie now works with the Association of Community Cancer Centers leading education initiatives for oncology care teams.
She is the creator of Survivorship Starts Now, a blog focused on cancer survivorship from diagnosis through treatment and beyond. Christie has been passionate about raising money for cancer research and patient support services for over a decade, and is excited to join the Cold Capital Fund to help other women access the same scalp-cooling technology that she benefited from during chemotherapy.
Shaina Boyle, Board Member
Shaina is a Strategy and Finance consultant who has worked in the Public and Global sectors for the past eight years. She was diagnosed with breast cancer at the age of 26 and took a leave-of-absence from her profession to become a full-time patient. After undergoing a
double mastectomy, her doctors informed her that her likelihood for cancer reoccurrence was high due to age and genetic factors. Based on this information, she agreed to undergo eight rounds of chemotherapy, but her anxiety about losing her hair started to weigh on her. This
was when she started conducting research on hair preservation and initially discovered cold caps. She had positive results with scalp-cooling, which she credits in keeping her spirits high during treatment and allowing her to feel a sense of normalcy during a very abnormal time.
Barbara Lewis, Board Member
Barbara Lewis is a Physician Assistant (PA) at Whitman Walker Health where she has worked for the last 20 years. After graduating from the George Washington University (GWU) in Education, she became interested in the feminist women’s health movement of the early ‘70s. It was the era of “Our Bodies Ourselves” with the idea of encouraging women to take charge of their health and their bodies. She started a Women’s Health night at the Washington Free Clinic and later at Whitman-Walker Clinic.
She returned to school in the mid ‘70s to become a Physician Assistant, working at the Howard University hospital Emergency room for the next 12 years. When the AIDS epidemic hit in the early '80s, she returned to GWU in the AIDS Clinical Trials Unit working to get new investigational drugs approved. A long time volunteer at Whitman Walker, she became an employee in 2000 focusing on HIV disease and LGBTQ health.
In May 2017 she was diagnosed with breast cancer and with the help of CCF, she learned about and used cold caps to save her hair during chemotherapy. It worked really well only losing about 25%, which was hardly noticeable to others and enabled her to work comfortably with her patients. She is happy to join the CCF Board to help make this available to all women who need help, and would benefit from this technology.