Until it Happens to YOU!

The other day I was perusing the ‘EB news’ of the day and I ran across an article of a family whose insurance did not pay for bandages (shocking, I know!) and the family resorted to get their supplies from a state program for children with disabilities which picks up expenses, usually outrageous, when the family cannot afford them. When the state was taking their sweet time approving the bandages and the family ran out, they were scared and upset, and understandably so. They contacted the news station to get their help, the state got pressured to approve and within days everything was all better.  Let’s face it, until it happens to YOU, you will never quite grasp how expensive and stressful it is to have a sick child. Never.

The comments under this article were quite disconcerting, but the one that got my attention was the one that stated how the “two ‘able bodies’ parents should go to work and pay for these bandages and not rely on the taxpayers to foot the bill”.

Insert vomit sound here.

Apparently this “person” is vastly ignorant about the significant expense of bandages (thousands of dollars a month) and relies on the talking points of those who could not care less about the misfortune of others and do not bother researching what exactly this family’s needs are and what they are going through. I can’t say I am surprised. I’ve had to deal with this kind of ignorance since Nicky was born when my insurance did not pay for bandages and there was no state program that covered them either.

tumblr_m7o7r1vxvA1qcn3oqo1_500Let me explain things for those that are willing to learn more about the plight of bandages for EB patients: they are as important as Diabetes’ patients supplies and chemotherapy treatments for cancer patients. They are VITAL. It’s the only treatment available for EB wounds. Period.
Should these supplies/bandages be covered by insurance? YES!!! The reason why we purchase an Insurance Plan is so our Health Care Bills are taken care of. Families with an EB patient only have ONE treatment for their condition: cover the chronic wounds with ointments and bandages. Unfortunately these supplies are outrageously expensive, which family can afford to pay $3-10,000 a month for bandages may I ask? Who? Many families are forced to skimp on their supplies, some have to lie about their income so they can apply for social programs. No family can afford such a bill unless they are independently wealthy.  You may sign the petition if you haven’t done so already, to try to light a fire under someone’s behind to FIX THIS.

And let’s not forget that this child is not like any other child. This baby cannot just be put in daycare while the parent goes to work to earn this supposedly exorbitant amount of money to pay for bandages. If family is not nearby to help, the only two options are to either pay for a Nurse (do you know how expensive it would be to pay for a full time Nurse? Look it up!) or one of the two parents is forced to stay home, so the income is slashed in half.

How do I know all of this? Because it happened to ME. I had to quit my great job to take care of Nicky full time when he was born, and to top it off the insurance did not pay for the bandages and there were ZERO state programs in Arizona that helped me in any way, shape or form, that’s why next time I better get an insurance online from One Sure Insurance. We lost our house, our cars, I used to have to wash and reuse bandages, something highly frowned upon and extremely risky but I had no choice. None.

I know what it’s like for nobody to give a crap, because, in my case, nobody did.

But why does it take to HAPPEN TO YOU to develop the compassion to learn more about the situation, ask questions, try to come up with solutions?
Why is it perfectly OK to have this attitude to ABANDON families in need, when to no fault of their own they were unlucky enough to have a sick child? What is wrong with our society when we decide to have the attitude of  ‘it’s not my child, not my community, not my problem?’

Is it too much to ask for bandages so our children can LIVE? To some, apparently so. Shame on you.

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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Insurance & EB

There is a difference between HMOs and PPOs as per it concerns covering EB related supplies.

For the most part, HMOs do not pay for any bandages or any wound care supplies. If they do it’s rare, although it’s been improving lately. Most HMO policies state that they do not cover “over the counter” items, and gauze, ointments and wound care supplies of any kind are indeed “over the counter” items.

PPOs, on the other hand, mostly do cover bandages (although not all), however, as for any PPO, they only cover 75-80% of the cost of the items. When you consider that a child with severe RDEB, who needs to be bandaged from head to toe, needs anywhere between $2500-$7000 worth of supplies a month, needing to pay 25-30% of that amount every month is financially draining on families. Even more so for those families who have HMOs.

What about Medicare/Medicaid? Those programs are income based, much like many State Programs, and while they do pay for bandages, not only the family’s income needs to be near poverty, they do not cover everything the patient needs. Many families in this predicament either will become completely financially devastated (under the Bankruptcy Abuse Prevention and Consumer Protection Act of 2005, families are no longer allowed to be relieved financially through bankruptcy, not even if it was for medical expenses), or are forced to do drastic things to meet the income requirements of the state, from divorcing, selling their homes etc.

Appealing a denied insurance claim

EB patients have the right to appeal a denied claim from their insurance company.

Information on how to appeal is often included in the denial letter from the insurer. If the information is not included in the denial letter, the patient can write to the insurer and request the information. It is best to appeal any denial by an insurer as soon as possible. Many insurance companies place limits on how long appeals may be filed following the denial of a claim.

Any time you contact your insurance company, record the time and date of your call and the name and job title of the person with whom you spoke. You should also keep a record of any contact with your doctor and conversations you have with your employer about your insurance. It is very important to get your doctor involved. A sample letter your doctor can modify for his/her own use can be found here. Having your doctor write a letter is also important because s/he can describe your condition, whether or not a certain treatment is medically necessary and the types of treatments you have already tried.

I tried appealing, but my insurance company is still denying my claim. What do I do now?

In addition to the internal review of appeals conducted by a health plan, many states also conduct “external reviews” or “independent reviews.” Once an individual has exhausted his/her avenues for appeal within the health plan, most appeals are eligible for external review by the state. Specific information and instructions for applying to your state’s review program can be found through the Kaiser Family Foundation or the National Association of Insurance Commissioners.
A template letter to send to the state insurance commission can be found below.

Sample letters

Here are sample letters that you can edit and send to an insurance company or your state insurance commission. You may copy or print these letters to use as a model. Note: These letters are only examples. Please edit each letter to suit your needs.

If you’ve been denied coverage, you may appeal the denial. Below is a sample of letter that can be used and edited to send to an insurance company or your state insurance commissioner.

Sample complaint letter to state insurance commission

Sample letter to insurance company contesting a denial of coverage


Several years ago (in 2005) a survey provided the information presented below: A new survey is available at the bottom of this post

Social Security Disability Income

Medicare list of contacts

How to get low cost/free Health Insurance for kids

Covering Kids 

1. A member in FLORIDA had SSI, which made her eligible for Medicaid. Medicare DID NOT PAY A CENT FOR WOUND CARE. Her grandmother, who took care of her, had to take on a part-time job to cover all the supplies needed.
2. Another member in FLORIDA has Medicaid. Medicaid will cover just about everything except for all the ointments and she needs quite a few of them, approx $100 worth a month.
3. A third member in FLORIDA has Medicaid, but they do not pay for any bandages. Bandaging supplies cost $1070.00 per month. These costs are mandatory and necessary for the survival of their child, and as a result, they live in a constant financial struggle to cover the basic needs of life, such as the mortgage payment and the utility bills.
4. A member in ALABAMA states that her Medicare covers just about everything she needs. On occasion she does need to buy needles to burst blisters, bandages, creams, sprays, and she has to buy stuff to clean sheets cause of blood and fluids.
5. A member in COLORADO states that her Medicare and Medicaid cover just about everything she needs.
6. A member in VIRGINIA states that she has Medicare and Medicaid. She pays $1 co-payment for each Dr. appointment and $3 for each prescription at the pharmacy. At this time the medical supplies she DOES receive are fully covered, as long as she fights the never ending battle to receive them. She states she gets Medicare because she worked for 1 year and qualified because of that. She receives Medicaid for being disabled and low income. However, Medicaid and Medicare do not cover any ointment of any type, creams, or lotion, tape, netting, or gloves. Also not covered are any bath products, eye drops and eye ointments. There are medications that would help her, but are not covered, so she goes without. She has an average of about $790.00 a month, out of pocket expenses. She states that she has a $600.00 income, which obviously isn’t even enough to cover the ointments she needs, that’s why she often settles on cheap Vaseline, which isn’t that great. But she has to work with what she’s got.
7. A member in WASHINGTON states that she has Medicaid. Medicaid covers most of what she needs except for silicone dressings which would be ideal for her to use. She has to purchase them herself sparingly, since they are extremely expensive, depending on the amount of money available.
8. Another member in WASHINGTON states that have been told “If Medicaid doesn’t cover the needed supply then the baby doesn’t need it!” (direct quote from their caseworker from her supervisor). What they cover they pay in full. Problem is they don’t cover all the needed supplies and they only pay for the lowest quality which we can’t use on the baby without causing sever blistering. We have been spending about $1200 a month on supplies.
9. A member in MISSISSIPPI states that they have Medicaid for their son and have had many fights to get the things they needed covered. It took a good bit of time to get them to cover his wound care and they still don’t have a full understanding as to why he needs what he needs. They state they run into lots of problems with suppliers as well. Their out of pocket expenses are about $140 a month, but they state their son is fairly mild compared to most.
10. A member in CALIFORNIA states that she has Medicaid, which in California is called Medical. She states that after a lot of fighting for the things she needs a justifying the reasons she need each product, she now get almost all of her supplies paid for. However, they do not pay for tape of any kind and she cannot get Surgilast or any type of stretch netting. They also do not pay for any of the natural products she uses including certain creams or the natural shampoo she needs for her flaky scalp. Vitamins are also not covered by MediCal, including a vitamin supplemental drink called Absorb Plus.
11. A member in SOUTH CAROLINA states that she has Medicaid and Medicare that pays for her supplies. She makes a $3.00 co-pay once a month when she picks up her bandages that her doctor has to prescribe for her, as well as a letter stating why & where she need the bandages for. She states she pays an average of $200.00 dollars a months on meds & ointments a month.
12. A member in INDIANA states that his Medicare pays for a certain amount of his medical supplies. He has an outlay of hundreds of dollars a month for products that his Medicare does not cover.
13. A member in NEW JERSEY states that his Medicare pays for everything buy eye ointments.

1. A member in CALIFORNIA with an HMO states that her insurance does not pay a cent for Wound Care supplies. Her insurance is through her husband’s work. She states she had CIGNA HMO before and they also refused to pay anything for Wound Care. She had letters from the doctors stating the necessity of these items, stating that taking care of the 2nd-degree burn-like wounds are the only treatment for her son and that if her son was hospitalized, these items would be covered and both Insurances denied coverage anyway. She states she wrote to the HMO Insurance Commission in Sacramento and they took the insurance’s side. At this time everything her son needs is covered through a State Program (CCS) which is income based. If CCS did not pick up the tab, their expenses would be over $2500 a month for bandages, wound care supplies and g-tube nutrition and accessories.
2. Another member in CALIFORNIA with Aetna Open Access, states the percentage paid by Aetna is 90% for in-network. The deductible is $250.00. Te office visits are $10.00 there is a $2,000.00 cap at which time Aetna pays 100% of covered charges. The coverage for out-of-network is as follows: $500.00 deductible Aetna pays 70% of reasonable and customary charges. The cap is $4000.00 and there is no co-pay. They state that they have a flex plan through his office which they submit the charges not covered and any misc. medical supplies not covered. Their insurance is through work. They state they pay about $1,000.00 a month on items for their son that are not covered. Even with their flex plan the company will often not accept what they submit because they do not consider it medically necessary even with a letter from the doctors.
3. A member in FLORIDA with an HMO states that their insurance does pay for everything. They cover 100 percent with no deductible. For office visits, the co-pay for primary doctor is $30 and the co-pay for specialists if $50. Their health insurance is through their employer. They pay 60% of the cost of their coverage but she pays the other 40% and all of the cost of her daughter’s coverage. Her premiums are about $300 per month. This member states that even with the health insurance covering all the wound care supplies per se, the costs associated with her child’s EB are still a strain on her finances.
4. A member in GEORGIA with a PPO states that her EB is very mild and she’s not on any medication nor in need of any supplies. Whatever she needs in terms of band-aids or insoles or anti-biotics, she purchases over the counter.

Blue Cross/Blue Shield
1. A member in NEW JERSEY with Blue Cross PPO has no coverage for supplies, the insurance only covers antibiotics & needles. Their insurance is through work, their out of pocket cost is about 4-500 a month on needed supplies, their child has a milder form.
2. A member in ILLINOIS with Blue Cross/Blue Shield HMO, states that their insurance does not cover bandages.
3. A member in UTAH with Blue Cross/Blue Shield PPO gets their insurance through work, the premium is $180 per month. Because the child was a special needs adoption he also has Medicaid. BCBS has a 25$ co-pay for office visits, Medicaid pays this. BCBS pays 80% of bandaging supplies and Medicaid makes the distribution company write off the 20%. Medicaid pays 100% of his prescriptions.
4. A member in CONNECTICUT with Anthem Blue Cross Blue Shield POE and also has the title 19 the Katie Becket waiver state children’s health program. Between both of them, everything is covered.
5. A member in MICHIGAN with Blue Cross/Blue Shield PPO states that medical supplies are not covered. The patient states that she has one of the milder forms of EB, yet she pays out approx $300 a month in products her insurance does not cover. She is single and the sole provider for her own home, food, clothes and drugs. She is highly educated, and works 35-60 hours/week in order to pay for the additional medical supplies, and to receive benefits. This is physically and mentally overwhelming at her level of pay. She states that the physical pain, wear and tear, and emotional drain of EB can be overwhelming. She states that there are many simplex patients who have to work long hours to make enough to pay for their disability, which is worsened by working.
6. A member in TEXAS with Blue Cross/Blue Shield PPO states that after $500/year deductible insurance pays 90% of bandages, creams, dressings, Aveeno bath, E oil. After $1,500 out of pocket money they cover 100%.
Nobody helps with filling, it’s entirely their responsibility. They pay first and then send the bills to the insurance and they will reimburse them (usually takes about 2-3 months). The insurance is through work, they pay $232.1/month ($2,785.2/year) They state that they incur about $1,500/year out of pocket expenses related to EB. Their biggest problem is that they have to pay immediately for all the supplies but insurance reimburses them 2-3 months later. That creates a huge cash flow problems for them and they are only surviving this thanks to the existence of credit cards. They realize they are very lucky to get the products covered, but the cash flow problem is very challenging.

United Health Care
1. A member in FLORIDA with an HMO primary and secondary, stated that they DO NOT cover any Wound Care Supplies. They get their Health Insurance through work and they pay $400 in monthly premiums. Including Pediasure and Prescription co-pays, they spend apx $250-$300 monthly on supplies. Sometimes more if its been a “bad month” wound wise
2. A member in IDAHO with a PPO stated that they paid for everything, but their child only lived 3 months. They had their Health Insurance through work, had a $150 deductible per year and a 20% co-pay. They could see any physician they wished. She states she is unsure of a cap, as the baby didn’t live long enough for them to worry about it. Out of pocket, she estimates they spent approximately $1000 on their baby’s care over the course of 3 months.
3. A member in NEW JERSEY with an Options PPO stated that they paid 80% of allowed amount if in network provider, they are responsible for the 20% of the allowed amount-not the charged amount. If out of network, they are responsible for the 20% of the amount charged. $3,000 maximum out of pocket expenses per year. $500 deductible per person. No cap. Physicians bill electronic and they pay only when they receive the bill that matches the EOB. They state they they got their insurance through work. Premium is about $21/week for a family of 3. Their out of pocket expenses not covered by insurance are mostly in the Boost Plus, plus another $110 in other miscellaneous purchases. Their approximate monthly expenses are $550.

Miscellaneous Insurance Companies
1. A member in CALIFORNIA has 2 PPOs: Motion Picture Health Industry (regular doctors & supplies) and
Blue Cross (hospitalizations). MPHI pays 90% of the allowed amount. They got a letter from one of her son’s doctors that stated that without these bandages, her son is at risk for significant morbidity. Other doctors write prescription after prescription every month for his necessary supplies. Initially they also had Aetna Insurance Company as COBRA from last job. They paid 100% of supplies and they didn’t even have to send them any documentation of why her son needed the supplies. This member states that fighting with their insurance company for her son’s right to life was a nightmare. There were many lies and retracting the coverage several times. After a 3 year battle, and a lot of waffling on the MPHI whether they were going to pay 85% or 100%, they’ve settled it down to be covered at 90%. For about a year after having these items approved to be covered, they would still get denial of benefits, so they had to point out the exception over and over again to them. This member states that they currently put out about $100.00 to $160.00 month in out of pocket for EB expenses, and she states her son is a rather mild form of RDEB. Before insurance kicked in, it was about $2500.00 to $3500.00 per month they paid out. This member tells us about other things that we have to be cautious about when caring for a person with EB that are never covered by any insurance: 1. Shoes-they can’t wear any kind. 2. Clothing that has to be tailored to accommodate various sensitive areas of the body. 3. Sunblock – lots! 4. Air conditioning in vehicles & homes because of the damage that heat causes. 5. One Income families – both parents not being able to work because no one will care for a child with this disorder because they are considered a liability (yes, I was told that by care givers!).
2. A member in INDIANA has Community Blue HMO. She states that she had Independent Health for the past 10 years; both are HMO’s and neither will cover the cost of any wound care supplies. Her children have medicaid as a secondary and they cover bandages in full although this system is a nightmare to work with. Her children’s doctors have wrote many letters of medical necessity and that definitely has made the difference in obtaining the best products they need. However, they are still fighting to get some approved and they currently do not obtain enough to carry the kids through a month at a time. This insurance is through work, it costs $65.00 a week and this is a bare bones policy when it comes to any coverage. Their out of pocket expenses are in excess of 200-350 a month depending on how the disease is effecting them.
3. A member in INDIANA has Sagamore/Ambassador Care. This is a managed care program offered through the Indiana State Teacher’s Insurance Trust. Currently, they are paying 80% of MOST bandages. They are paying 100% of wound care bandages such as Mepilex Transfer and Mepitel. Their monthly premium for their family is $292. If they have referrals in place from their PCP, most procedures are covered at 100%. For out of network procedures, we have to prove that the procedure cannot be done within the network. Their out of pocket expenses a month are $140.
4. A member in INDIANA has an HMO from an unknown provider. They do not state if bandages are covered, but they state they have out of pocket expenses averaging $75 a month.
5. A member in OKLAHOMA has an PPO from unknown provider from a Hospital where she works. All of her bandages and skin care supplies are available to her over the counter and are not covered by insurance. She states that her costs are relatively small compared to other EB patients she has had physician assistance with her supplies. She pays 100% of all her wound care and associated costs. Although not a wound care product, she also has alopecia associated with EB. Since she is female and must adhere to social norms to keep a job, she spend an average of $3000 a year on wigs. Since wigs are considered a cosmetic item, she pays 100% of this cost. Finally, she had to have had extensive dental work, especially caps, due to weak enamel which may or may not be associated with EB. While her dental coverage pays for twice-yearly checkups there is a $1000 per year cap on all major dental work. She spend about $500 to $700 a year on bandages and another $500 to $700 a year on ointments and the other supplies. This figure is for wound care items only and does not include socks, shoes, or wigs.
6. A member in OKLAHOMA has an HMO called Community Care. She claims that they DO NOT cover any of her wound care supplies and never have. Their policy states that they do not cover these items, even with a prescription. Her dermatologist has written a letter of medical necessity to appeal their decision, but she was told by a case manager that it was given directly to the CEO of the company, but he denied it immediately. She has paid for all of her wound care supplies and therefore cannot afford to use the “advanced” wound care products that she need. The insurance is through work and her premium is 85.00 a month. Her total out of pocket expenses are about $440.
7. A member in WISCONSIN has an insurance called Wausau Benefits HMO. There is a 80/20 co-pay. Their daughter is also under a grant funded program called the Katy Beckett program which is tied in with Medical Assistance (Badger Care). They cover the co-payments and anything that the primary insurance doesn’t cover. There is a $1,000,000 lifetime cap. Insurance is through work. They spend approx. $150 per month on various items, besides immediate EB-related items such as bandages or ointments. This would include items that their daughter can wear/use or play with that need to be adapted to her situation or won’t harm her. Whether it’s toothbrushes, mouthwash, shoes or a toy – EB affects what is bought.
8. A member in ILLINOIS has Cigna HMO. They have no bandage coverage unless a home-health nurse is involved. Insurance is through work and it is $103.40 every 2 weeks for three of them. They state their child, even though has RDEB it’s rather mild and they do not bandage him much. They spend about $80 out of pocket for each child per month. They do not qualify for any state program because they make a bit more than the limit $40k).
9. A member in ILLINOIS has Tricare through the Military. They cover all the expenses but they do not use the bandages often as their daughter has one of the milder forms. The hospital supplies them with the needles for the blister popping and the bandages. They would not cover gene testing though. The biggest financial problem they have is not being able to put their daughter in daycare so that mom can work so their income was cut in half. Their daughter cannot wear shoes without blistering and most daycares require them to wear shoes, plus they will not take the extra care for the child to care for her skin during the day if mom worked.
10. A member in OHIO has North American Health Plans PPO. There is no co-pay, only a $100 yearly deductible. The plan pays 90% for in network and 75% for out of network providers after the deductible is met. There also is a $1250 out of pocket per year and once this is reached then they pay 100% of the approved amount. Both her kids also have Medicaid Waiver for the state of Ohio as their secondary insurance. Medicaid will usually pick up what is left over after the primary insurance pays. The Medicaid Waiver is also what pays for their in home nursing care. Between their PPO and Medicaid almost everything is paid for. Each child receives $5000 to $7000 in bandages per month. They know they are very fortunate for getting so much of their supplies to be covered.
11. A member in OHIO has Aultcare PPO. They have no wound care coverage, however, they state that their daughter is very mild simplex and does not need much.
12. A member in MISSOURI has Healthlink Open Access HMO. They have 90% coverage, and they pay 10% out of our pockets. There is no deductible. She states that they faced many challenges. Their son (severe RDEB) had a GJ tube surgery and the insurance company only paid 80% of the cost. Since the insurance has changed and they are responsible for their 10%, they cannot pay for everything that the child needs each time they have to place an order. They have tried to get help but their income is too high. They sold their house and used most of their equity money to pay off their medical bills and get current with the bills coming from their supply companies. They pay a little extra each month so they can keep getting supplies. Otherwise, they will deny them altogether. Their average out of pocket expenses are about 200.00 per month, depending on the supplies they need for particular wounds.
13. A member in MASSACHUSETTS has HMO Tufts Navigator. Some bandages are covered under this plan. Her outlay a month is about $250. She states that the dilemma with her form of EB is: A less severe form of EB creates this scenario: Not severe enough to need a wheelchair, but when the feet get blisters she can’t get out to work or shop especially in winter months. When she can’t get her dentures in because of mouth blisters she also stays out of work. Extra time away from work depletes the funds. But she need to work to afford the insurance and to buy medical supplies to help her get to work and support herself! How severe does she need to be to apply for SSDI?
14. A member in ARKANSAS has Qual-Choice HMO. She does not state if the insurance pays for bandages or not, but she does state that she always purchased her own dressing supplies when needed, so probably not.

Please help other families navigate this insurance maze by filling out this survey below. THANK YOU!

A Bandage Tale

It seems as if all people see, when they come in contact with a child with EB, is gauze. Some wonder if the patient has been into an accident or a fire, others fear it’s contagious: “what happened?” is a common question tossed around, but most just look dumbfounded, not being able to formulate a thought or a question. It’s OK, we get used to it, we all get used to it, eventually. So much so I barely notice it anymore, and my son does not notice it at all. This is not something we see every day. After all, EB is rare. Very rare.
However, I wonder if people know where those bandages come from. Does that cross their mind? Do they also wonder how much they cost? How long and painful bandage changes are?

I wanted to tell a short version of my story as it relates to bandages, because I feel it needs to be told. The “no details left unsaid” version will be part of the book I am currently writing about my son’s life.

To say Bandages are expensive is the absolute understatement of the year. This is a photo of how many bandages it takes to do a whole body  change, which we do approximately every 3 days. What we are doing currently is splitting it up in three portions and do a portion of the body every night. It takes about 2 hours each night, if we were to do a whole bath/bandage change, it would take us anywhere between 6-8 hours.
As this photo shows, there are 25 Xeroforms, 8 Vaseline Gauze, 1 bag of Webril, 7 Polymem, 2 Coban, 9 4″ gauze, 2 2″ gauze, 2 1″ gauze, 1 jar of Alwyn cream, 1 pair of tubifast socks, 5 Mepilex, 2 Mepilex Heel, 2 Mepilex Transfer, and then Surgilast cut for his arms, legs & thighs, Baby Oil in case there is anything stuck, tea tree oil, Pain Medication and Miracle Mist to spray on the Polymem so it’s not so dry. Scissors and Needles of course are par for the course. I also use oils, namely Argan and Coconut oil to massage his hands with which I did not include in this list. We constantly change what we use, but this is what we use now. Cost? Astronomical… just to name a few, the Xeroform alone is over $65, it’s $35 for the Polymem, the Mepilex is $165!! Just google ‘Wound Care Supply’ store and you can figure it out. It’s thousands of dollars every week worth of bandages. What family can afford this?

The answer to the main question which is surely twirling in your head is… YES. Our insurance, thankfully, pays for his bandages right now… but I am always waiting for the shoe to drop. You see, my son is nearly 16 years old, and the insurance only started paying for his wound care supplies 3 years ago. Before then a program for children in California called CCS covered most of it for several years, although I must state that for them to cover the bandages, I had to get a letter of denial from the insurance every year. You would think it would be a simple thing to get, but there are years that I went 3 months… 3 months without bandages WAITING for this letter that the insurance kept telling me was ‘in the mail’. Infuriating? You bet. I wrote letter upon letter, sent photos upon photos to the HMO commissioner in Sacramento, and they would always write me back telling me ‘They don’t have to pay’. Our argument that bandages for Nicky were not a ‘temporary thing’ but the ONLY treatment for EB went on deaf years over and over again. The state of Arizona though, which is where Nicky was born, had no such programs, we would end up putting the bandages on credit cards, and it wasn’t only the bandages. We had co-pays out to wazoo because Nicky was always visiting a different specialist and ended up needing physical and occupational therapy twice a week each at $30 a pop… since I had to quit my job to take care of Nicky full time, we drowned. Nicky was a little over a year old when I had to declare bankruptcy.
Without credit and without bandages, after the bankruptcy we survived using bandages donated to us from other parents, who sent us their overstock, and I made them last by washing and reusing them endlessly, even things they told us could not be reused or rewashed. I would let bandages soak in bleach for a day or so, wash them, re-roll or have them dry in a clean spot etc. Then on occasion we would get a big shipment from a parent’s whose EB child had died.

The saddest thing about this whole story? It’s a US only problem. Through the Internet I have met families with EB children all over the world, and, save for those families that live in third world countries which I can’t speak to so I am not sure how they survive, supplies were never denied elsewhere. Not a single patient I have met that lives in New Zealand, Australia, Canada, the European Union or even South Africa, was ever denied bandages. I am Italian, and if Nicky had been born in Italy, he would have had all the supplies he needed from day 1, and a visiting nurse twice a week. A visiting nurse? Save for the first 4 weeks of Nicky’s life, where a nurse came by once a week, I never, ever, got a visiting nurse again… and, I’ve asked! I remember once when Nicky was 3 months old, colicky, full of wounds, I was going out of my mind. I called the pediatrician’s office in tears asking for help. Did I get it? No.

I am not one to complain, but my story needs to be told. I don’t know what the answer to this problem is, but since I know the US is hell bent in not having real Health Care, only for-profit care, Insurances need to realize or be forced to realize that bandages for an EB patient are not a “luxury” but a “necessity”.  Bandages are also not a luxury for many other conditions and situations, we’re not talking about your run of the mill scrape or bump, we’re talking about ulcers the elderly get, we’re talking about any condition that leaves the patient with a chronic wound.

If you know of any Congressman with a HEART, please refer them to the Bill below, we need all the help we can get!


Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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My take-away from the Debra’s PCC in Orlando – Part 8 (last)

A consensus Approach to Wound Care

This talk was given by Dr. Elena Pope and it was very interesting. I think what would have helped more-and perhaps this is something I will suggest for future conferences-if it came with a full blown Wound Care 101 with explanation and showing of the different products available. I know I am not only speaking about myself when I say that, even though Nicky is nearly 16 years old, since there are always new products out there which we are unsure how to use, a hands-on explanation with samples given to try would have been extremely helpful. Just me?

Anyhoo…the presentation started with an explanation of chronic wounds and how to care for them. How important Hemoglobin levels are to keep the healing ongoing, which is why iron supplements and infusions are so important.
Chronic Wounds are like a vicious cycle and once you get one it’s hard to get rid of it because it basically feeds on itself. Ugh. Another thing to keep into consideration is if the wound edge is even or rocky. Rocky might mean the big C, so she stressed the importance of having it biopsied. Ick. She stated that SCC (Squamous Cell Carcinoma), which is usually sun induced, with RDEB and the wounds constantly trying to heal, it starts in there, making it more aggressive as it would otherwise be. The absence of collagen VII makes it more aggressive than usual because it’s the collagen that fights the cancer to begin with.

The most important slide that you will ever see is this one on the right. Click on it to see it bigger and print it! That’s what I did. It goes on detail of what you should use on what type of wound. For example… what to put on just for protection or if it’s an itchy wound or an infected wound or a painful wound. I would have liked if it came with names of products in detail with choices, such as… Mepitel is better than Xeroform on this type of wound and that sort of thing, but overall I think it’s very helpful!!

Here is the video of this presentation, courtesy of Debra of America:

Cell Therapy for EB

This talk was given by Dr. Alfred Lane-this is the second talk that I was very excited to hear. Unlike the Protein Therapy, which would need to be infused into the patient every 4-6 weeks to keep the disorder at bay, this is a genetically modified skin graft which would permanently heal whatever area it’s put on. It involves Gene Transfer, which is inserting the correct gene into the DNA structure using a virus, and it starts working right away.
Only 5% of DNA makes protein, so the risk is minimal. It would involve a skin biopsy, growing cells in vitro, viral transfer to genetically cure the faulty gene and the making of skin to staple to the wound (skin graft). This would last the life of the individual. That area is CURED! No more blisters!

The biggest obstacle in doing this for years and years was to get FDA approval but that obstacle is now surmounted. Several years ago they tried this method on an Italian patient in Turin and it worked, he no longer blistered in that area.

I actually spoke to this patient on the phone once and told me the details and he was very excited!
They have been trying to get the trials started for a while now (a couple of years at least) but now Dr. Lane stated that they should be starting the first subject this year. FDA rules require patients to be at least 18 years old to give their full consent, but after they have 5 successful subjects trials, they can re-evaluate and the FDA will most likely approve patients between 7-17, the patient still has to understand and give their consent, that’s why he/she has to be older than 7.

Dr. Lane explained how this is truly a long term solution and they had never a single problem or side effect with the mice they worked with and there are no unnecessary risks to patients. Other skin disorder advocates and researchers are keeping a close eye on this particular research because if it’s a success, it will help hundreds of thousands of other patients suffering from not only other forms of EB but also one of the other 300 skin disorders out there.

When asked ‘when’ the trial will be over and this will become available to everyone, Dr. Lane had a hard time being specific. He wanted it to be done yesterday, a year ago, 5 years ago. If you would have asked him 10 years ago, he would have said a couple of years. It’s hard to say. It’s hard to predict when obstacle will come to delay the process.
I remember adding in my mind the 5 patients and how long each patient will be in the trial, so if everything went extremely well, maybe a couple of years? Who knows.

For more information about this study, please go to THIS LINK.
They are now recruiting patients for the trial, please contact Emily Gorell, to find out more about study enrollment and requirements.
She may be reached at (650) 721-7166 or egorell@stanford.edu.

Here is the video of this presentation, courtesy of Debra of America:

Management of Esophageal Strictures in EB Patients

This talk was given by Dr. Richard Azizkhan. An Esophageal Stricture is a scar or narrowing of the esophagus that can make swallowing solids or even liquids difficult. The scar involves the lining of the esophagus, not the muscle.
This slide shows the probability of it depending on the EB subtype. I must admit, I sighed when I saw this. By the time Nicky was 3, he had to have his first, and he was so bad I ended up needing to put a g-tube on him as well at the same time. According to this chart, only 10-15% of RDEB patients need this at this age. Wonderful. Ok, moving on…

The only technique used these days that works best in fixing this issue is the balloon dilatation. Dr. Castillo at Stanford proudly told me he was the one that came up with this procedure :0).  He stated it works well also because it can be repeated multiple times on the same patient without a problem, even dozens of times.

However, as with anything, there are caveats.

The patient cannot have very severe anemia for example. Dr. Azizkhan sadly stated how one of his patients almost died and had to be resuscitated and later went into a coma because they did not know how anemic he was before the procedure. Always make sure the patient is not severely anemic beforehand! Cincinnati now routinely does blood-work beforehand to make sure this never happens again.
I talked to the mom of this patient… to be honest, I cannot imagine. Not only this child (I believe he is maybe 5 years old?) has rather severe RDEB, he woke up from the coma not exactly like he was before. Because his brain went without oxygen for a time, he has a long road ahead. Neurologists say that because he’s still a child and his brain is still forming there is a lot of hope for him. Please pray for this precious child!!

These slides give a LOT of good info on how the procedure is done and what the outcome has been over the last 20 years of doing this procedure. Please click on the image to open a bigger version.

OK, part of this talk also included gastronomy tubes, or g-tubes for short and indications. The most important indication is growth failure. As I stated in a previous blog, not ‘just’ for weight issues, but growth failure indicates also failure in stature and head circumference. It’s also a safety net for those that require constant, multiple throat dilatations and also to address behavioral issues and family dynamics. It becomes a must for about 40-50% of RDEB patients and also many newborns with feeding issues of all other forms of EB.

The patient is initially given a temporary tube and several weeks later a permanent tube, most commonly a mic-key is put in place.  

Here is the video of this presentation, courtesy of Debra of America:

Below is a video from the 2010 conference about Dilatations and G-tubes.

Ocular Surface Rehabilitation in Dystrophic EB

This talk was given by Dr. Arturo Kantor, who had quite an array of interesting information. Before his talk the only issue with the eyes I ever heard of or experienced are corneal abrasions, which Nicky is, of course, not a stranger to. However, he related that some patient have SEVERE eye involvement, and those that do, usually have Dystrophic EB and also have esophageal involvement. Some patients with Junctional have these problems as well, but he stated this is not a problem that Simplex patients have at all.
His suggestions were to use Preservative Free Lubricants and Bandage Contact Lenses. CL do not prevent erosions, but new epithelium grows underneath and helps the eye.

The contact lenses he suggests are not available over the counter, and must be High DK over 120, highly permeable. He also suggests GenTeal Gel for eyes.

The doctor also showed some videos of a patient he had to replace the cornea of… highly graphic videos that I squirm just thinking about, so I will spare the one photo I took of because it reminds me of them, ha ha.

Here is the video of this presentation, courtesy of Debra of America:

Insurance Advocacy

Medicare Info

This talk was given by Michelle Graham was the FINAL presentation of the conference!! She started with an explanation of the various HMO, PPO, POS, EPO and also Medicare, Medicaid and CHIP.

A good website to look at, with detailed information about all the different programs that may be available in your state is: http://insurekidsnow.gov/

She also discussed how fully vested insurance plans are much better and offer a lot more coverage than self funded employer plans. She stated it’s important to make a list of things needed, such as bandages, doctors, medications before switching plans, review the list with your HR or broker and request a written letter to validate what was told to you. If the new plan is lacking what you need, ask for other plans or if exceptions can be made depending on diagnosis.

If a claim is denied, be pro-active. Call and write your insurance provider, write everything down, know your rights. Call your State Insurance Commissioner with problems.

Here is the video of this presentation, courtesy of Debra of America:

Here is the video from the 2010 Conference!!

Please Note: I tried to post as many videos from the 2010 Conference as they were appropriate in their respective sections. ALL the videos that are available to be watched can be found HERE: http://www.youtube.com/user/ebnursemarketing?feature=watch

The videos from the 2012 Conference are now available and I embedded the link in the respective sections. THANK YOU!!!

Links to — > Part 1Part 2 – Part 3 – Part 4 – Part 5 – Part 6 – Part 7

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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Caregiver Poll Results

Around 2004/2005 a poll was posted on this website to ask various questions such as where they get bandages, if they have help etcetera. Here are the results of that survey.

The vast majority of people that have answered the survey stated that one of the parents is home full time and does all the bandage changes. Others tried to get the State to help, but they exceeded the income requirements (which in many states is 30k a year, no matter how many other children they have). Others tried to find daycare so that the children would have interaction with other kids, but most daycare centers did not want to accept that kind of liability. For those that either had hired help or had the state pay for the help, or had interesting tidbits about the care of their children, here’s what they said…

Here’s what some of the parents have said!

  • We have 2 nurses (for 2 RDEB children) and they both are allocated about 45 hours a week. They can do their whole bath and bandage change. The nurses are paid through the state of Ohio under the Medicaid Waiver program. The nurses go everywhere we go.
  • I have two boys with EB and live in state of NJ we also have a Medicaid waiver program and I was able to have nurses to help. They were allowed to do everything except the IV and they went everywhere with us. My youngest has a nurse to go to school with him in which the school pays for it.
  • We do have a pediatric nurse 35 hours a week that can do limited wound care. When I say limited I mean that she can apply ointments and change bandages. When it comes to draining blisters she will get one if it’s large, but she can’t do feet (they are the trickiest and most painful) and doesn’t get the smaller blisters. Insurance pays for her completely. She also goes to school with him.
  • We have a nurse from the hospital comes once a week to be sure our son has no infections, and a nurse “helper” who comes 4 times a week. They help with the bandages by holding him, I do the bandages and burst the blisters myself. They come 1 hour and a half a day for now. They are flexible. They bring all the bandages, that’s the best part, we really can’t afford those. We live in Canada.
  • We are very fortunate we have grandma to take care of our daughter 3 full days and 2 half days during the week. The other half days she is in pre-school. We pay her $200 every two weeks which is cheap but the most she would take. Our daughter needs are not severe just the mending of falling wounds and blister popping and grandma does great at this. Her preschool teacher has been notified and trained on wound care by me and I supply all of the bandages.
  • I am the sole caretaker of both my EB children. One of my girls is on SSI, and for her many needs, I receive 283 hours a month (California State max of a program called IHSS-In Home Supportive Services) I can choose to have someone else come in and help me, or I can do it all myself. At present, I do it all myself. It works out to 9.5 hours a day every day, throughout the month.
  • We took care of our daughter (JEB) ourselves. I did have friends watch my toddler (EB free) so I could do dressing changes in peace.
  • My son is 17 now. He has RDEB. I have always done the dressings myself with him helping as he got older . Now that he is pretty much a man, he doesn’t want my help. The only thing I do is put water in the tub for him and set out all his bandages and supplies. He does the rest. He is very independent!! He is truly my hero!
  • I do receive 25/week of skilled RN nursing and they are able to do bandage changes and popping blisters but my child still prefers MOM to do it. My child gets SSI and Medicaid through the state of Rhode Island and they pay for the nursing also he attends pre-k and has a CNA that rides the bus back and forth and also cares for him in the classroom, she does not do any bandaging and will take him to the school nurse if he needs any and the school department pays for that.
  • I have a LPN that comes 1 or 2 times a week to give my daughter her bath and do her dressings. She is paid for by Children’s Special Health Care Services, an extension of Medicaid in the state of Michigan. It was hard to bring her in to do this since she was 4 1/2 when she came. At first she didn’t like it at all that someone else was doing it, but now she looks forward to the nurse coming – she gives longer and more fun bathes than I do.
  • We live in the Philippines and we hired 3 certified Nurses, they each spend about 14 hours a day. They can do everything, they trained with us at the hospital so they are as familiar with dressing changes as me and my wife. We pay them about $500-800 a month.
  • Here in New Jersey the school system pays for the nurse and they hire who they want (for school). NJ Medicaid pays for the supplies.
  • Here in Florida the local hospital informed me of a special medical daycare in my city of residence. The State Program from Medicaid and Children’s Medical Services (CMS) pay for the caregiver to come to the house 35-40 hrs a week and for the bandages. I do most of the bandage changes myself at home but I personally trained her nurse on how to do dressing changes. She does full changes if they become soiled or if my child takes her bandages off.
  • My daughter has RDEB and we live in Florida, both of us work but mom only part-time. A Nurse takes care of her, we found her through our Insurance, although insurance only pays for one visit a week, and we pay for one more visit a week out of our pockets. We do dressings every day, but full blown bath and bandages every other day. Our insurance is Aetna HMO, right now they pay for supplies with a $5000.00 out of pocket then they pick up the rest, with one nursing visit per week. The nurse comes twice a week to assist me, it takes us 4 to 5 hours per dressing change. Everything the nurse does, he has to do with me. He is not comfortable doing any of it without me. He is a RN also not a LPN.
  • Our grandaughter, which we care for, has RDEB and we live in Oregon. The State pays me 20 hrs a month to care for her from (HMO) DD SERVICES. Our HMO Insurance pays for the bandages. We get whirlpool treatments 3 days a week, 20 minutes in the whirlpool.
  • We live in Washington State and in our situation both parents work, one part-time. I found our caregiver through a Girl Scout Troop. Our daughter is on SSI and they pick up the tab for the supplies we need. Our caregiver does not do any bandaging.
  • We live in Mississippi and thankfully our insurance is paying for the bulk of things at this time. We are on Medicaid. Mom does all the dressings, baths etc for our son. Before mom decided to stay home from her full time job we had a full time baby-sitter/caregiver, however the extend of care she could do as far as wound care was a quick patch up job and draining of blisters.

If you have any hints or tips for other parents regarding help or how you get bandages, please leave a comment below! Thank you!

Dealing with Insurance Companies

By Melanie (Logan) England
(this information formerly on the EBmommas website)

Ignorance is not bliss. 90% of Epidermolysis Bullosa related claim denials from insurance companies are due to ignorance of this rare disease. As if you did not have enough to do, it is now your job to educate them on EB. People who have never seen a child with EB simply cannot fathom why we need all these bandages. Here are some steps to take to get your insurance company to work for you:

-Ask your doctor to write a plan of treatment that details the types and amounts of bandages needed for each dressing change and how often dressing changes should be done. Send a copy to your insurance company. Often since mom or dad knows the family routine best the doctor will allow you to write this yourself then they will review and “sign off” on it.
-Insist that your insurance company assign you a case manager. Having one person who can become familiar with both EB and your individual case can be invaluable. Send the case manage pictures of your unbandaged child. Pictures speak a thousand words.

Getting your claims processed

-Keep a copy of EVERYTHING! It’s much better to deal with piles of papers that to find you are missing an important form or piece of documentation.
-At each doctor’s appointment or hospital stay ask for at least two itemized copies of your bill. One for you, one for the insurance company. Almost all insurance companies will require an itemized bill rather than a receipt.
-If you have to complete your own claim forms, ask your insurance company to send you a stock of forms so you don’t run out. Make a copy of each form you fill out for your personal records, recording on it the date you mailed it in.
-Deal with a pharmacy that uses a computer system that allows them to make you a printout of all your prescriptions.

What to do when a claim is denied

-Ask your insurance company for a claim rejection in writing specifying why the claim was denied.
-Immediately file an appeal. Ask that your claim be examined by the companies’ medical review board.
-Ask each and every doctor or therapist who follows your child’s care to write a letter to the company on your behalf. Ask that they detail why the treatment or prescribed item is medically necessary and the possible complications of your child not receiving them. Keep a copy of these letters for your records.
-The best way to get a timely response for your appeal is to politely state in your letter that you will expect a response within a set period of time (ie;30 or 60 days), or you will contact your state insurance commission.
-Keep a phone log of every phone call to and from your insurance company. Note the date, time, who you spoke to and a summary of the conversation.
-Provide the insurance company with as much information as possible that supports your claim. Photographs, medical records, medical articles, and names of insurance companies that do pay for the same services or supplies.

What to do if none of the above works

-If you don’t receive a timely response or your appeal is denied, do contact your state insurance commission. Send copies of all the denied claims, all the documents you provided the company, a copy of your phone log and all of their written responses to you. State in your letter that you are filing a formal complaint about the company. The commission will document your complaint and ascertain if any further action can be taken against the insurance company. Below is a listing of the address and telephone number of all 50 states insurance commissions. We also recommend to check out information provided from the Insurance Partnership company, which is one of the best companies you could rely on now a days

Alabama Department of Insurance
135 South Union Street
Montgomery, AL 36130
Phone: (334) 241-4126…..Licensing Manager
Phone: (334) 269-3550

Alaska Division of Insurance
Anchorage Office:
3601 C Street, Suite 1324
Anchorage, AK 99503-5948
(907) 269-7900 (phone)
(907) 269-7910 (fax)
Juneau Office:
9th Floor State Office Bldg
333 Willoughby Ave (99801)
PO Box 110805
Juneau, AK 99811-0805
(907) 465-2515 (phone)
(907) 465-3422 (fax)

Arizona Department of Insurance
2910 North 44th Street, Suite 210
Phoenix, Arizona 85018-7256
Phone: (602) 912-8470
Fax: (602) 912-8453

Arkansas Insurance Department
1200 W. Third St.
Little Rock, AR. 72201
Phone: (501) 371-2600

California Department of Insurance
License Bureau
320 Capitol Mall
Sacramento, CA 95814
E-Mail: General Information
Phone: (916) 322-3555

Colorado Division of Insurance
1560 Broadway, Suite 850
Denver, CO 80202
Phone: (303) 894-7499

Connecticut State Department of Insurance
P O Box 816
Hartford, CT 06142-0816
Phone: (860)297-3845
Fax: (860)297-3872
Director: Raymond Claytor

State of Delaware Insurance Commissioner’s Office
Wilmington Office:
1st Federal Plaza
710 North King Street
Wilmington, De. 19801
Phone: (302) 577-3119

Dover Office:
841 Silver Lake Blvd
Rodney Building
Dover, De. 19903
Phone: (302) 739-4251

Florida Department of Insurance
200 East Gaines Street
Tallahassee, Florida 32399-0300
Phone: (904) 922-3100

Georgia Insurance Department
716 West Tower
2 Martin Luther King Jr. Drive
Atlanta, GA 30334
Phone: (404) 656-2070
Phone: 1-800-656-2298

State Of Hawaii Insurance Division
250 S. King Street, 5th Floor
Honolulu, Hawaii 96813
Phone: (808) 586-2790

Idaho Department of Insurance
Licensing Division
700 West State Street
P.O. Box 83720
Boise, Idaho 83720-0043
Phone: (208) 334-4342
Fax: (208) 334-4398

Illinois Department of Insurance
320 West Washington Street
Springfield, Illinois 62767-0001
Phone: (217) 782-4515
FAX: (217) 782-5020
TDD: (217) 524-4872
Illinois Department of Insurance
100 West Randolph
Suite 15-100
Chicago, Illinois 60601
Phone: (312) 814-2427
FAX: (312) 814-5435
TDD: (312) 814-2603

Iowa Insurance Division
Lucas Building, 6th Floor
Des Moines, IA 50319
Receptionist: (515) 281-5705
E-mail: General Info.

Kansas Insurance Department
420 SW 9th St.
Topeka, Ks. 66604
Phone: 913-296-3071
Fax: 913-296-2283

Kentucky Department of Insurance
Agent Licensing Division
Post Office Box 517
Frankfort, KY 40602
Toll Free: (800) 595-6053
Phone: (502) 564-6004
Fax: (502) 564-6090

Louisiana Department of Insurance
Office of Licensing & Market Compliance
950 N. Fifth St.
Baton Rouge, LA 70804-9214
Phone: (800) 259-5300
or 5301 / (504) 342-5900

Maine Bureau of Insurance
Department of Professional and Financial Regulation
Bureau of Insurance #34 State House Station
Augusta, Maine 04333-0034
Phone: (207) 624-8475
Fax: (207) 624-8599

Maryland Insurance Administration
501 St. Paul Place
Baltimore, Maryland 21202-2272
Phone: (410) 333-6300
or 1-800-492-6116
Michigan Insurance Bureau
Mailing address
For US Postal Service mail, use this address:
Michigan Insurance Bureau
P.O. Box 30220
Lansing, MI 48909-7720
Delivery (street) address
For overnight services, UPS, or freight deliveries, use this address:
Michigan Insurance Bureau
611 W. Ottawa
Lansing, MI 48933
Receptionist: (517) 373-9273
General Information (Recorded Menu) (517) 373-0220
Licensing – Agents/Agencies (Recorded Menu) (517) 373-0234
Fax: (517) 335-4978

Minnesota Insurance Division of the Department of Commerce
133 East Seventh St.
St. Paul, MN 55101
Phone: (612)297-7161

Mississippi Insurance Department
P.O. Box 79
Jackson, MS 39205
Phone: (601) 359-3569
Fax – (601) 359-2474

Missouri Department of Insurance
P.O. Box 690
Jefferson City, MO 65102-0690
(573) 751-4126

Nebraska Department Of Insurance
Terminal Building
941 “O” Street, Suite 400
Lincoln, NE 68508-3690
Phone: (402) 471-2201
TDD: (800) 833-7352
Voice: (800) 833-0920

Nevada Department of Business & Industry Division of Insurance
Carson City/Reno
1665 Hot Springs Road, Suite 152
Carson City, Nevada 89706-0646
Phone: (702) 687-4270
Fax: (702) 687-3937
Las Vegas
2501 East Sahara Avenue, Suite 302
Las Vegas, Nevada 89158
Phone: (702) 486-4009
Fax: (702) 486-4007
E-Mail: Department Mailbox

New Hampshire Department of Insurance
Carol Beaudoin, License Supervisor
NH Insurance Department
169 Manchester Street, Concord, New Hampshire 03301
Phone: 271-2261 Fax: 271-7029

New Jersey Division of Insurance
20 West State Street
P.O. Box 325
Trenton, N.J. 08625-0325
Telephone: (609) 292-5360

New York State Insurance Department
New York City
25 Beaver Street
New York, NY 10004
Phone: (212) 480-6400

North Carolina Department of Insurance
P.O. Box 26387
Raleigh, NC 27611
Phone: (919) 733-7343
Fax (919) 733-6495

Ohio Department of Insurance
2100 Stella Ct.
Columbus, OH 43215-1067
Phone: 1-800 686-1526

Oklahoma Department of Insurance
3814 North Santa Fe
P.O. Box 53408
Oklahoma City, OK 73152
OKLAHOMA CITY AREA (405)-521-2828
In State Toll Free (800)-522-0071
Fax Phone Number (405)-521-6652

Oregon State Insurance Division
Phone: (503) 947-7984
E-Mail: Insurance Division

Pennsylvania Insurance Department
1326 Strawberry Square
Harrisburg, PA 17120
Phone: (717) 787-2317

Rhode Island Department of Business Regulation
233 Richmond Street
Providence, Rhode Island 02903
Phone: (401) 277-2246
FAX: (401) 277-6098
TDD: (401) 277-2223

South Carolina Department of Insurance
P.O. Box 100105
Columbia, South Carolina 29202-3105
Phone: (803) 737-6095
Fax: (803) 737-6232

South Dakota Division of Insurance
118 W Capitol
Pierre, SD 57501
Phone: (605) 773-3563
Fax: (605) 773-5369

Tennessee Insurance Division
500 James Robertson Parkway
Nashville, Tennessee 37243-0574
Phone: (615) 741-2693

Texas Department of Insurance
333 Guadalupe
Austin, Texas 78701
E-Mail: Elton Bomer
Phone: (512) 322-3503
Fax: (512) 322-4380

Utah Department of Insurance
3110 State Office Bldg.
PO Box 146901
Salt Lake City, Utah 84114-6901
Phone: (801) 538-3800
Fax: (801) 538-3829
TTY: (801) 538-3826

Vermont Division of Insurance
89 Main St (City Center)
Drawer 20
Montpelier VT 05620-3101
Phone: (802) 828-3303
Fax: (802) 828-3306

Washington State Insurance Commissioner
P.O. Box 40255
Olympia, WA 98504-0255
E-Mail: Kacy Brandeberry
Phone: (306) 407-0341
Fax: (306) 438-7629

West Virginia Board of Risk & Insurance Management
4501 MacCorkle Ave. SW
300 Ghannam Bldg.
South Charleston, WV 25309
Phone (304) 766-2646
Fax (304) 766-2653
toll free inside WV 1-800-345-4669

State of Wisconsin Office of the Commissioner of Insurance
121 East Wilson Street
Madison, Wisconsin 53702
Phone: (608) 266-3585
Madison: (800) 236-8517
Statewide: (800) 947-3529
(TDD) (ask for 608-266-3586)
Fax: (608) 266-9935

Wyoming Insurance Department
122 W. 25th Street
3rd Floor East
Cheyenne, WY
Phone: (307) 777-7401