Insurance & EB

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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, which she’s fine with it, since she had other aesthetics procedures made in the past by great cosmetic professionals. 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 (providing also the guaranteed issue whole life insurance). 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.

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