The diagnosis of alopecia areata from a dermatologist usually follows weeks or months of shock, fear and confusion. The gradual hair loss associated with the disease can be discovered in many ways; unusual amounts of hair on a pillow, clumps of hair clogging the shower drain, a bald patch felt when putting hair up, or a comment made by a hair dresser.
Though there are no two cases of alopecia areata exactly the same, the discovery of the hairloss and the diagnosis of the disease can cause very similar feelings in all patients. It is important to recognize that the majority of individuals with alopecia areata do have patchy alopecia areata, hair loss which presents in patches and experiences regrowth without treatment. However, NAAF understand the concern associated with all types of hair loss, and has programs designed to meet the needs of all alopecia areata patients.
Alopecia areata is a common disease that results in the loss of hair on the scalp and elsewhere. It usually starts with one or more small, round, smooth patches. It occurs in males and females of all ages, but onset most often occurs in childhood. Over four million people in the United States are affected by alopecia areata.
In alopecia areata, the affected hair follicles become very small, drastically slow down production, and grow no hair visible above the skin’s surface for months or years. The scalp is the most commonly affected area, but the beard or any hair-bearing site can be affected alone or together with the scalp.
There are three types of alopecia areata; alopecia areata, alopecia totalis and alopecia universalis.
Alopecia areata, the most common variation of the autoimmune disease, presents itself as round, smooth patches of various sizes.
In all forms of alopecia areata, the hair follicles remain alive and are ready to resume normal hair production whenever they receive the appropriate signal. In all cases, hair re-growth may occur even without treatment and even after many years.
Alopecia areata occurs in males and females of all ages and races; however, onset most often begins in childhood and can be psychologically devastating. Although not life-threatening, alopecia areata is most certainly life-altering, and its sudden onset, recurrent episodes, and unpredictable course have a profound psychological impact on the lives of those disrupted by this disease. But there is hope. In all cases, hair re-growth may occur even without treatment and even after many years.
After an alopecia areata diagnosis, it is important to realize that you are not alone. NAAF has developed many programs aimed at connecting individuals who have alopecia areata in common. Whether you would like to talk with another parent on the telephone, or you would prefer to have your family attend a local support group, NAAF can help. It will do you no good to keep your questions and your feelings bottled inside; there is somebody who will understand, and may even have a bit of valuable advice.
Treatment options are best discussed with the Dermatologist who made the diagnosis. However, there is general information that NAAF can provide, based primarily on your type of alopecia areata. This information is only useful as a resource; your doctor should be your primary source of all medical information.
If you are unable to find a dermatologist in your area who treats patients with alopecia areata, please contact info [at] naaf.org or 415.472.3780. NAAF has a list of dermatologists across the country who treat alopecia areata patients.
Many people with Alopecia Areata are trying to convince insurance carriers to cover the cost of a prosthesis even when the law does not require it. Information from people who have succeed in obtaining insurance payments for hair prostheses or medical treatments has been compiled in NAAF’s Insurance Packet. NAAF will provide this packet upon request.
Here, in brief, are the steps we suggest you follow to convince an insurance carrier to cover the cost of hair prostheses or medical treatment:
- Check your benefits and covered expenses. Copy any page that specifically states that prosthetic devices (or treatments) are covered for alopecia areata or other types of hair loss.
- Complete the claim form.
- Obtain a doctor’s letter or prescription stating the need for a hair prosthesis or treatment.
- Obtain the “Quality of Life Investigation of Patients with Alopecia Areata” from NAAF, and include it with your claim. This report by NAAF grant recipients Drs. Wilma Bergland and Berna Remzi contains an outline that indicates the negative impact of hair loss from alopecia areata.
- Obtain receipt that says ‘hair prosthesis” and have the person who provides you with the prosthesis sign your insurance form.
- Take pictures of yourself without a wig or corrective eye makeup(pictures can also be used to emphasize why treatment is needed).
- Enclose a NAAF brochure describing alopecia areata.
- Provide a detailed personal account of the emotional effects of your alopecia areata (and discuss the costs of frequent hair prosthesis purchases).
- Ask your employer for a letter stating the importance of your general appearance, including your hair.
Prepare for Denial of Your Claim
- Speak with your plan administrator.
- Obtain a list of your rights as the Insured.
- Obtain a copy of your full contract.
- Know your contract. Pay particular attention to exclusions for prosthetics (wigs may be excluded as cosmetic). If your policy does not spell out exclusions under prosthetics, this may help you win your claim. If your claim is denied as ‘not a covered benefit,’ write an appeal.
- As for a review by a medical review board
- Attach a copy of your original claim and all supporting materials. Explain the difference between a wig and a prosthesis. Explain the functions of body hair: it protects the scalp from the sun; protects eyes from dust particles; regulates body temperature; filters particles from the nose and protects the skin.
- If you are undergoing treatment, explain again how this is NOT cosmetic treatment.
- Ask for a written reply (insurance companies resist writing anything that may be considered ‘bad faith’ in future court cases).
- Send your appeal to a claims supervisor or manager. If you don’t, the person who initially reviewed your claim may reject it again.
Consider Small Claims Court
- Keep all correspondence in preparation for this possibility.
- Do not reply on your memory.
- Insist on written confirmation from your carrier for all conversations. Make sure this includes date, time and full name and title of the person with whom you spoke.
- You should follow up all conversations with your own confirmation letter, which you should supply to the insurance carrier. Make sure to document the date, time, and full name and title of the person with whom you spoke.
Contact Your State Insurance Commissioner
- You may file a claim against your insurance company through your state Insurance Commissioner’s office.
Work with your State Legislature to Secure Mandated Coverage
If you or someone you know has been diagnosed specifically with alopecia areata, you may request information from NAAF here.
We will send you a basic information packet that contains:
- A letter of introduction
- A list of NAAF support groups and telephone support contacts
- Brochure - What You Should Know About Alopecia Areata and the National Alopecia Areata Foundation
- Brochure - Helping You Cope with Alopecia Areata
If you specify that the person with alopecia areata is under 18, we will send the basic information packet plus:
- Brochure - A Parents Guide - Parents Talking to Parents about Alopecia Areata
- Brochure - Alopecia Areata: From a Child's Point-of-View (written and illustrated by children for children)
- NAAF newsletter excerpts on raising a child with alopecia areata and promoting self-esteem
- Information on becoming part of the NAAF Children's Network
- Two stories from the NAAF newsletter written for young children (if the person is age 13 or under)
Let NAAF Help YOU Help Your Patients with Alopecia Areata!
- Increase patient satisfaction and create better outcomes through support from THE worldwide organization for alopecia areata.
- Order our family of educational materials designed to answer questions to people of all ages with alopecia areata.
- Receive our quarterly newsletter to stay up to date on the latest medical, research, awareness and support activities concerning alopecia areata. The newsletter is great reading for your waiting room.
- Allow NAAF to refer patients to you.
Receive a FREE Medical Professional's Toolkit in the mail, that will include:
- Sample brochure - What You Should Know About Alopecia Areata and the National Alopecia Areata Foundation
- Sample brochure - Helping You Cope with Alopecia Areata
- Sample brochure - A Parents Guide - Parents Talking to Parents about Alopecia Areata
- Sample brochure - Alopecia Areata: From a Child's Point-of-View (written and illustrated by children for children)
- Medical professionals' order form for additional patient educational brochures for your office
- Application form to become part of the ALOPECIA AREATA MEDICAL PROFESSIONAL DIRECTORY
- Current NAAF quarterly newsletter
Fill out this form today and we will send you a kit.