Caring for ichthyosis is expensive. What could possibly be so expensive about skin care, you ask? It’s not like we’re visiting the Clinique counter at Saks every week.
Let’s talk about the cost of creams. (Full discussion of all of the other costs could take up an entire series of posts on their own.)
Even with health insurance, prescription medications are very expensive. Rachel uses a dab of Tazorac about once a month, and the older boys get it every now and then, too. Without insurance, Tazorac is about $500 a tube, and even with insurance our out-of-pocket payment is well over $100 a tube. The cost of other prescription medications such as Soriatane (acitretin) is very high, too.
Setting aside our occasional use of the prescription meds, we go through a huge amount of moisturizing cream and lotion. Apply liberally to the entire body, at least once a day, with more frequent use “as needed”.
One thing we hear often when we go out is, “Wow. Your son’s hands are dry. You should put some cream on that.” Sometimes, they even pull a small tube of something and offer it to me. That offer is even funnier when it’s made while in line at Costco, when there are 3 cases of cream ($15/jar, 12 jars per case, total cost of cream in the cart $540)
Um. Ok, I’ll get right on that.
So yes, we spend an awful lot of money on cream.
Beiersdorf, the company that makes Aquaphor, Eucerin, Nivea and Hansaplast, has offered a program for several years now where they will send a free case every three months to someone affected with ichthyosis, epidermolysis bullosa, and other severe skin disorders.
All you have to do is talk to your doctor and ask them to send Beiersdorf a letter confirming your diagnosis and what you use to treat it (hint: the name of a Beiersdorf product goes there) and ask to be enrolled in the program. Then you call up the customer service number and tell them what product you want and they ship a case to you. Three months later, call again for a refill (you don’t need a new letter), and it’s on your doorstep the next day.
Beiersdorf, you are a wonderful company and are performing an amazing service to the ichthyosis community. I know families that were on disability and limited incomes that were not treating their skin because of the cost of the lotions, and this program has made a real, positive impact on their lives. Our own family spends half as much on cream as we do on groceries every month. Your generous program has made a real impact on us and I cannot thank you enough.
(Disclosure: We participate in the Beiersdorf program and receive Aquaphor and Eucerin from them.)
Contact numbers: Have the doctor fax the letter to 1-800-645-1391 (this may or may not still work. Updated number is 203-563-5940). The general customer service phone number is 800-227-4703.
UPDATE 11/5/12: I called customer service and was told that this program is only available in the United States.
UPDATE 6/24/13: The new fax number is listed.
UPDATE 10/28/14: New fax number is 203-563-5940