Q: Who can use cold caps/scalp cooling therapy? What other resources are there for patients?

A: Many chemotherapy patients can use cold cap/scalp cooling therapy, including all solid tumor patients. The specific drug treatment plan and various health factors will need to be considered. Generally, the first step is to consult with your physician. Provider websites can also be a good starting point, offering information about the process, how to order caps, and phone numbers for more detailed information.

There are some other resources for patients. 

Breastcancer.org has a number of existing chat rooms for cold cap or scalp cooling patients. Or you can start your own discussion. 

And the Chemotherapy Support Group on Facebook is a community forum. It’s a place to ask questions, offer advice and support each other.  Topics discussed in the group cover everything from drug regimens, ways of coping with chemo side-effects, to practical tips on capping.  Many members are using or have used cold caps or scalp cooling machines. The group is hosted by Penguin Cold Caps but is not brand specific - all are welcome.

Another excellent support group for past, present and future cap users is Cold Cappers Support Group. Patients speak very highly of the knowledge and support they have received here.

Paxman Scalp Cooling has a patient-centric website, https://coldcap.com, which can help patients decide if this process is right for them, and which also offers extensive support and guidance along the capping journey. Paxman also has a Facebook support group for past, present and future users of the Paxman system. 


DigniCap also has a chat group called DigniCap Connect.


For patients with young children, a former patient has written a children's book on moms going through chemo, to try to make the experience less scary. Here is the link.


Q: Why does cold matter?

A: Studies have shown that chilling the scalp slows down the metabolic rate at which hair cells absorb nutrients or anything else in the blood like chemotherapy drugs. Further, the extremely cold temperature of the caps constricts the blood vessels leading to the hair follicles, reducing the amount of chemo drugs that reach the follicles while the caps are worn. As a result patients can save most of their hair (some thinning may occur). Of note, the drugs stay in the patient's system far longer, but reach the hair follicles when they are at somewhat diluted strength.


Q: Why is a biomedical freezer helpful?

A:  Manual cold caps can be cooled with dry ice, but dry ice is difficult to handle and uniform temperature control is problematic. A biomedical freezer keeps all caps ready at the correct temperature, continuously. Standard freezers do not get cold enough to get cold caps to their required temperature.


Q: Are cold caps uncomfortable?

A: For about the first five minutes after each manual cap is put on, the sensation is quite cold. Warm blankets are helpful, and a shoulder massage seems to help as well. The discomfort dissipates after that, and the remaining 15-25 minutes of wear are comfortable to the point that one can hold a normal conversation or even play cards to pass the time. Manual caps are changed at regular intervals of 20-30 minutes throughout the entire chemo day, so this cycle repeats.

Machine caps are not changed. The patient puts on a room temperature cap and ensures the fit is good. The nurse then turns on the scalp cooling machine, and the cap gets cooled. Once it reaches the set temperature, it stays there for the duration. Machine caps are not as cold as manual caps, because the machine keeps them at a constant temperature and they don't warm up during the chemo session.

Of note, even if a patient had chemotherapy without scalp cooling therapy, his/her body would feel cold because the saline being infused into the blood circulatory system is at ambient (room) temperature, not body temperature. This is why chemo clinics often supply blankets and patients are usually advised to wear sweaters.


Q: How difficult is it to learn to use manual cold caps or scalp cooling machines?

A: Practice makes perfect. For both systems, learning to fit the cap to the head properly is critical to success.

For manual caps, we recommend a couple of dry runs with frozen (frozen in home freezer is sufficient for practice) caps the day before chemo. A minimum of one person assisting the patient is essential, and more than one is helpful but not critical. The patient's helper(s) need to keep track of time, keep the patient drinking water throughout the process, check the temperature of the new caps (especially if on dry ice and not in a freezer), swap out the old and new caps and straps, and keep the patient warm during the first five minutes of each cap application. As each complete cap change has to occur in less than two minutes, and the actual scalp exposure time between caps must be only a few seconds, everyone needs to know his/her job. Again, practice really helps.

For machine caps, the patient needs to practice fitting the cap to her/his head before chemo day. At the clinic, once the cap is on (nurse may or may not help you with the fit), the nurse will connect the cap to the hoses and turn on the scalp cooling machine.


Q: Is this process just for women?

A: Not at all. Manual cold caps have been used by men, women and some older children (adolescents). With regard to machine scalp cooling systems, they have been cleared for all adults. Check with your provider regarding age limitations.


Q: I’m about to undergo chemotherapy and my doctor hasn't mentioned saving my hair. Is this process not widely available?

A: The FDA has issued several clearances for machine scalp cooling since 2015. Awareness is increasing but some physicians still need to learn about the safety and effectiveness of this process, and many infusion centers do not yet have the machine equipment. However, with the approval of the patient's physician, individuals can rent a set of their own manual caps from manual cold cap providers and use them with dry ice if necessary. The Rapunzel Project is continuing to facilitate the use of manual cold caps by donating biomedical freezers to clinics, as they make manual cap process more manageable for more patients.


Q: What does cold capping/machine scalp cooling cost?

A: Costs will vary depending on the provider. Other factors affecting costs include the number of chemo sessions, or the number of months the caps will be in use. The cost of three to four months of manual capping will be $1000 - $1800, depending on cap provider selected, plus the cost of dry ice if needed; optional professional cappers can add considerable expense but are not essential. Machine scalp cooling typically runs $1500 - $2200. Cap providers (for manual caps) and clinics (for machine capping) can be more specific. 


Q: Are manual cold caps or machine scalp cooling covered by insurance?

A: Machine scalp cooling has received CPT diagnostic codes from the American Medical Association. 

CPT® codes effective July 1, 2021

Effective 1/1/2022, Medicare will reimburse chemotherapy facilities for the cost of machine scalp cooling. Please discuss with your provider or clinic if you are Medicare eligible.

Both DigniCap and Paxman have insurance sections on their websites that will be helpful to their users.

Manual cold caps have no unique CPT codes assigned to them. Some suggested CPT codes are:
97039 (Constant attendance) This code is also reported to be used by Blue Shield for Durable Medical Equipment
A9273 (Ice cap, cold wrap or pack)
A9282 (Wig any type, Cranial/scalp prosthesis) 

Your manual cap rental provider may know of patient insurance successes. Coverage is inconsistent but not uncommon. Be sure to discuss with them before filing your claim.


Patient Reports:

A 2017 patient received 80% reimbursement of her cap rental fees from Blue Cross of California. She reports they used code 704.00 for alopecia, and code A9282 for the cold caps (full cranial hair prosthesis). 

In March 2018 an Aetna patient received 80% reimbursement for her manual cap rental fees. She reports using Diagnosis Code L65.9, Procedure Codes 97010, NCD110.9.

In December 2017 a cap user from Atlanta wrote “I just got my reimbursement check from Aetna for my cold caps!! I filled out the Medical Reimbursement Form, attached my itemized bill from Penguin and typed up a letter saying what all the equipment was and how it works (copied from Penguin website).  The code used was E1399 for durable medical equipment.  I didn't keep my receipts for dry ice since it wasn't covered then but I am thrilled to have my caps covered!!! The nurse case manager was super helpful in figuring this out with me.”

We also have a report (Jan 2018) of the first coverage approval for rented caps that we are aware of from United Health Care. The code that was successfully applied was again E1399 for durable medical equipment.

ICD codes on your claim form need to match your diagnosis exactly. These will likely be in the range of 0–C96.9 (Malignant neoplasm)
Suggested ICD diagnosis codes are:
Z51.11 (Antineoplastic chemotherapy)
L65.9 (Nonscarring hair loss unspecified, chemotherapy induced alopecia)

A 2016 patient advised that she submitted for reimbursement using a primary diagnosis code of L65.9 for a cranial prosthesis. This appears to be a new (in 2016) code - and she was told the info below is no longer current. However we are leaving it posted at this time in case it still has any usefulness. 

In 2014 we learned a patient was successful with insurance! The patient wrote:

I wanted to let you know that after denying my claim for cold caps, Anthem Blue Cross reversed themselves and paid. Below are the procedure and dx codes that did the trick. The first time they denied I called up and asked for the basis of the denial and checked what code they had used. They had changed the procedure code to an unspecified code and denied on that. My appeal was for them to process as the doctor had ordered. They did and paid ($1073 out of $1700 submitted). Please encourage others with and without Blue Cross to submit. Every time someone gets paid, it is a victory.

Cranial prosthesis A9282

dx alopecia for chemotherapy 704.00

We previously learned of a New York State employee whose insurance (through the state) did pay for about 85% of her cold cap rental expenses. Here's her story:

My oncologist's prescription stated that it was for a "Full Hair Prosthesis" for chemo induced alopecia, dx. code 179.9. When I telephoned my insurance company, they told me they would cover up to $1,500 for the cost of a wig.

After I completed chemo, I submitted the prescription, an invoice from MSC-Worldwide, and copies of my credit card statements showing the monthly fees I paid. (I submitted nothing about the deposit.) The insurance company first rejected my submission with no explanation code. I followed up by telephone and was told they rejected it because it was for a rental, not a purchase. I argued that no one told me about a rental exclusion etc. and they very nicely said that they would resubmit the claim, which much to my surprise, they then paid!

For further discussion of insurance coverage for cranial prostheses for chemo-induced hair loss, please read here.

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