Nonprofits Raise Awareness and Funds to Help Chemotherapy Patients Keep Their Hair

One of the biggest concerns cancer patients have about undergoing chemotherapy is the loss of their hair. This sudden hair loss can be traumatic, not only because our hair is an integral part of our personal identity, but because hair loss also means a loss of control and privacy. A treatment called scalp cooling allows patients undergoing chemotherapy to keep more of their hair, and two nonprofit organizations are dedicated to spreading awareness about scalp cooling and increasing cancer patients’ access to it.

The Science Behind Scalp Cooling

Scalp cooling is exactly what it sounds like, keeping a patient’s scalp cool during chemotherapy treatments. Scalp cooling has been used around the world for decades to prevent chemo-related hair loss, but it is relatively new in the United States.

The cold reduces the flow of blood to the hair follicles, so the follicles absorb less of the chemotherapy medications. The cold also slows the rate of cellular metabolism in the scalp, which lessens the effect of the chemo medications on the scalp.

Patients still experience some hair loss, but, according to HairToStay—a nonprofit organization founded in 2016 to raise awareness and provide subsidies to patients so they can take advantage of scalp cooling treatments—one-third of the treatment recipients retained more than 80% of their hair and half retained at least 40% of their hair. This had a tremendous effect on the patients’ sense of well-being, control of their privacy and desire to be social.

Manual and Automated Cooling Options

There are two methods for cooling the scalp during chemotherapy. Manual cold caps have been used in the United States for about 10 years, but only on a limited basis. The U.S. Food and Drug Administration (FDA) has not cleared manual cold caps, so patients must rent them privately and bring them to their treatment centers. Patients need more than one cap because the caps must be switched out as they warm up during treatment. Replacement caps must be kept cold at -22 degrees Fahrenheit, a temperature most freezers don’t reach, so patients often have to rely on dry ice in a cooler. The Rapunzel Project, a nonprofit organization based in Minnesota, has been instrumental in raising money to purchase biomedical freezers for the cold caps and installing them at infusion centers.

Another method of scalp cooling was approved by the FDA in December 2015. It uses an automated device that provides continuous cooling to a cap, making multiple caps and freezers unnecessary. While the automated machines are becoming more available, most patients still use the manual caps for the treatment. 

Since scalp cooling is still quite new in the United States, insurance companies usually don’t cover it. To make this treatment available to those who wouldn’t otherwise be able to afford it, San Francisco-based HairToStay provides need-based grants so more patients have access to the treatment, either the manual caps or the automated system.

HairToStay is funded by private and corporate donations, business partnerships and crowdsourced funding. It also partners with haircare professionals, manufacturers and beauty product distributors across the country to raise funds and awareness. HairToStay encourages salons to hold fundraising campaigns called Salon-a-Thons, and HairToStay works with them to tailor a program that works for them. Some examples of salon fundraisers include donating the proceeds from a day of service or product sales, hosting a cut-a-thon, or pledging a percentage of service and/or product sales for a period of time.

To learn more about HairToStay, to donate or to apply for a subsidy for scalp cooling treatment, visit HairToStay.org. To learn more about The Rapunzel Project or to donate, go to RapunzelProject.org.

Analiese Kreutzer is a contributing writer to VivaTysons and VivaReston. As a long-time resident of the area, she is passionate about the communities, people and businesses our publications cover. She can be reached at AnalieseKreutzer@gmail.com.