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NEW MASTHEAD FOR EPPREF NEWS
EPPREF member Chris OBrion, an editorial cartoonist by profession, has modified our logo (the sun symbol was designed in the 1970s by then EPP Kid Connie Truitt). He has added improved lettering to give our first page (i.e. the first page of our paper edition - the sun symbol on our home page is his design) a spiffy new look. Thanks, Chris!
TIPS ON GETTING LUMITENE PAID FOR BY YOUR HEALTH INSURANCE PLAN
An EPPREF member gives the following hints on getting Lumitene covered by your health insurance plan, which worked for him.
1) Do not let the people who handle claims discourage you - ask (insist, demand, if needs be) to be connected to your insurance plan's authorization department.
2) Send or fax to them:
- a cover letter explaining that you have EPP, that Lumitene is the only effective treatment to date for EPP, that Lumitene used to be a prescription item (then known as Solatene) and now is non-prescription, and that they should still cover its cost, since it is the same as Solatene. Also include your social security number and insurance plan number, and give your phone number and ask them to call you.
- a copy of the "to whom it may concern" letter describing EPP that Dr. Roth can provide you (write to EPPREF requesting it, if you have not already requested it: please enclose a self-addressed stamped envelope).
- a copy of the article on Lumitene, which is in the "Treatment of EPP" section of "EPPREF NEWS- The First 20 Years".
3)When a plan rep does call, or if you have to call the authorization department again, don't forget to get the name of the person to whom you speak, so that you don't have to explain the problem over and over again.
Our correspondent says that his health insurance plan eventually approved coverage for Lumitene as a special exemption to their rule about only paying for prescription drugs (in your discussions with them you can suggest that they give you a special exemption). They gave him a special number to use when he orders the Lumitene, which he has to do through a pharmacy. It may take a while to find a pharmacy participating in your plan willing to order Lumitene, but keep trying until you find one. The company may also ask you to get a prescription for Lumitene from your physician, even though it is a non-prescription drug. If you have to do this, make sure your doctor orders refills: 22 bottles of 100 capsules should cover you for a year (adult dose of 6/day x 365 = 2190, or about 22 bottles of 100). Most prescriptions are good for one year. Good luck! Keep at it, and let EPPREF know the results of your efforts.
PEN - PAL REQUESTS
An EPP Kid, Joseph Frye, 8 years old, wants to hear from other kids. His address is: 153 Beechwood Street, East Liverpool, OH 43920
An EPP Adult from England, Dick Byford, whose hobbies are mountaineering (he is a trained mountain leader), backpacking and Aikido (he teaches kids) would like to hear from US EPP people, either by regular mail or e-mail. He can be reached at: 128 Aylesbury Road, Wendover, Aylesbury, Buckinghamshire, HP22 6AD, United Kingdom. His e-mail address is:Dick.Byford@iname.com.
ANOTHER POSSIBLY EFFECTIVE SUNSCREEN
Several people have mentioned that "Bain de Soleil" Extra Dark works well. Some say you have to put it on twice for it to be effective. In other words, apply to the skin areas you will expose to the sun, then once you have finished, re-apply the sunscreen to those areas. This sunscreen is made by the Consumer Health Group. You can call them at 1-800-723-7529, for stores in your area which carry it.
MEDICALERT
The following article about MedicAlert is reprinted from "Orphan Disease Update" published by the National Organization for Rare Diseases (NORD):
SPECIAL EMERGENCY ATTENTION TO RARE DISORDERS
By Bruce E. Jones Professional Education Manager, MedicAlcrt
A huge number of Americans suffer chronic, rare or "hidden" ailments that complicate their lives. These conditions can becomc critical when they are combined with an emergency that places the individual in an ambulance and emergency room. lndeed, according to the American Medical Association, some 220,000 Americans make unplanned visits to ERs each day and, of these, some six percent, or 13,200, suffer from life-threatening delays or complications because medical responders simply do not have information about the patient's pre-existing conditions.
These numbers are made even more dramatic by the estimate that one in four Americans (65 million people) suffers from some 200 hidden medical conditions. However, this does not seem to recognize those who have any of the 5,000 rare or "Orphan" diseases that NORD has identified. The best estimate is that about 20 million Americans have these rare ailments, and that a high percentage of them may be life-threatening.
AMA's "Journal of the American Medical Association" (JAMA) recently reported that the number of people in the nation with "chronic" conditions is about 100 million - almost one- third of the population - and will increase to 148 million by the year 2030. It is not clear whether this report takes into account those life-threatening but rare disorders counted within NORD's 5,000.
It is clear, however, that those with chronic and/or rare conditions comprise a significant proportion of the population and that increasing numbers will find themselves in the hands of emergency first responders and ER personnel. How can these people be protected during thcir time of critical need?
Since 1956, an effective response to this challenge has been MedicAlert, which today is the nation's leading emergency medical information service, credited with saving 80,000 lives. Over the decades, some 2.2 million Americans with special conditions have joincd MedicAlert and received its universally-recognized emblem, which is worn as a bracelet or pendant. On it is engraved the member's vital medical conditions, as well as an ID number and the hotline phone number for emergency personnel to call for further medical information. Those patients who reach ERs unconscious or disoriented simply cannot communicate their needs and medical problems to attending personnel. They are at risk and may not receive proper treatment.
The cost of an initial membership in MedicAlert is $35, followed by a $15 annual renewal fee. Computer files can be updated as frequently as necessary at no charge for annual members. All medical information provided to MedicAlert is kept confidential. Readers may join MedicAlert by calling (800) 432-5378.
We invite the members of NORD who are seeking increased protection and peace of mind to consider membership in MedicAlert. You'll be joining a non-profit organization that protects many individuals and will be ready to help you as well.
ED. NOTE: It might be a good idea for EPP people to consider joining MedicAlert. The point of wearing their bracelets is to alert emergency room and rescue squad people on how to treat you if you are in an accident. Since EPP people who have had surgery have reacted to the strong operating room lights, and also should not receive drugs or anesthetics which slow down bile flow, it would be wise to alert emergency personnel to these potential problems. We are working with MedicAlert to provide them information about EPP. If you want to join MedicAlert, write to us to get a copy of their application forms and the information we have prepared for them. Again, please send a SASE: OR click on the MedicAlert button in the Patient Resources section of our home page and print out the material we have prepared for MedicAlert (which we would have sent to you if you wrote us) - but you will still have to call them to get their application form.
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