coaches corner

After months of uncertainty waiting for a diagnosis and finally finding a physician who can treat your rare skin disease, you return from the mailbox with a denial letter from your insurance company. After the shock and frustration has subsided you are now faced with the decision of whether it is worth appealing this insurance determination or should you start back at “square one”.

Chances are that the insurance company is counting on you not appealing but according to the U.S. Government Accountability Office, one report revealed that in the four states that tracked such data, 39 to 59 percent of private health insurance appeals resulted in reversal. Those are pretty good odds!

Here are some tips on how to appeal:

1. Read the denial letter carefully. Make sure that you learn about your insurer’s appeals process. In the coverage documents and summary of benefits, insurance companies are required to give all the tools needed to properly make an appeal. There are often deadlines to meet, so act quickly and send it to them as soon as possible.

2. Ask for help from your doctor. Check the medical policy and ask your doctor to review it to prepare something called a letter of medical necessity to support your case. If your doctor is not able to help, be prepared to handle it yourself. You are your best advocate!

3. Contact the IPPF. The foundation can help provide you with resources about the disease and publications citing the use of treatments used for your condition. These documents can help support your case to the insurance company.

4. Write a testimonial letter. You have a rare disease and it is likely that the person making the decision knows nothing about your disease. A letter with pictures detailing your story and exactly what happened will make it personal. Tell them that you are seeking approval for treatment, note any supporting science, clinical evidence, expected benefits, etc. Be clear, firm and concise. Make it clear that you plan to pursue the appeal until it is resolved and is approved.

5. Follow up. Many appeals take weeks, even months, so call often to check the status and take notes of each call. When you speak to the insurance company, write down the time and date, length of the call, the name and title of the person you speak with and all the details of the conversation. Make note of any follow-up activities and next steps to be taken.

Remember, many insurance companies have a tiered appeals process. The first level is processed by the company’s appeals staff or medical director responsible for the denial. Second-level appeals are reviewed by a medical director not involved in the original claim. The third level involves an independent, third-party reviewer. If your insurance company continues to deny the claim; you can then take the appeal to your state’s insurance department, state insurance commissioner or even your local legislators who have staff to assist you.

This process may seem overwhelming but it is worth it. Your health and the health of other pemphigus and pemphigoid patients may be impacted by the awareness you create with the insurance claim.

If you need assistance, just “Ask a Coach!” Remember, when you need us, we are in your corner!

Pemphigus and pemphigoid (P/P) can take a long time to improve or reach remission. The process can take months or even years. Although it may seem that this disease appeared overnight, in fact, it has taken a long time to present itself, and it will most likely take just as long to resolve. So the question often arises, “How do I know if I am improving?” Improvement can be measured in a couple ways, so here are some tips to measure whether your disease is improving:

1. Keep a log of disease activity – It’s easier to measure if you can see it on paper.

2. Amount – Count the number of blisters, their location and write them in your log. If you have less blisters than before then you are improving.

3. Frequency – Take note of the blisters and how long they take to resolve. If they are clearing up quicker than before then it is showing improvement.

4. Fatigue – Pemphigus and Pemphigoid cause fatigue. A clinical sign of improvement should be less overall fatigue.

5. Talk to you Doctor – Ask your doctor what signs they look for that indicate improvement. Working together with your physician to reach remission should be your biggest priority.

Improvement is a step-by step process and can be slow. If you follow these tips you may just find that you are improving, even if it’s just a little at a time. Knowing that you are improving will help you realize that you are in control and on the road to remission.

Have other questions about measuring improvement? Just “Ask a Coach! Remember, when you need us, we are in your corner!

Having a rare disease like pemphigus or pemphigoid can make you feel like you have lost control of your life. After being diagnosed you may experience fear, confusion, and you may feel unclear about your future. You may even feel helpless, vulnerable, and at the mercy of others. Your self- esteem may be compromised along with your immune system. The anxiety or stress that can bring may be overwhelming. The good news is that these feelings are normal and more importantly that you truly do have the power to stay in control!

Here are a few tips on how to keep calm and stay in control:

1. Offer help to others – this will help you keep your disease in perspective

2. Find the “silver-lining,” in every situation – there is always something positive to gain

3. Respect and accept that you can’t control everything – the sooner you realize this, the better!

4. Don’t be a victim, be a contender!

5. Be proud of yourself – every day is a step in the right direction

6. Learn about your disease – knowledge is power

7. Be self-determined – you are the master of your fate

8. Speak up for yourself – being heard builds affirmation

9. Consider how your disease will help you grow as an individual

10. Don’t be afraid to ask for help and support!

You are not in this alone and there are many patients that are experiencing the struggles that you are going through. If you reach out to others through the IPPF you will find that you really are in control and together with other patients like you we have the power to overcome this disease.

Not sure how to connect with others? Just “Ask a Coach!” Remember, when you need us, we are in your corner!

Living with a bullous skin disease is a challenge in more ways than one. In addition to taking medication we also need to be taking supplements, avoid certain foods and spices, take caution in how we move and bathe, and relax to reduce stress.

We also need to take extra precautions against the sun’s harmful rays…more so than the average person who does not have pemphigus or pemphigoid.

It isn’t always a sunny day that can bring the harmful rays. Cloudy days can be deceiving – you can get your worst sunburns through the clouds. Reflections from the water in swimming pools, lakes, oceans, etc. increase the harmful effects of the sun’s rays as well as the reflections from the snow when skiing.

Women also need to make sure that their foundation has an SPF ingredient – this was told to me by the national makeup advisor for Dior. I never knew this! But it does help…even if we don’t actively stay out in the sun and are just running around doing errands.

According to the American Academy of Dermatology:

“Dermatologists recommend using a sunscreen with an SPF block of at least 30, which blocks 97% of the sun’s rays. Just make sure it offers a broad-spectrum (UVA and UVB) protection, an SPF of 30 or greater, and is water resistant.”

Before trying to figure out which brand is the best to buy, discuss with your dermatologist. He/she can make suggestions for you based on your skin’s level of activity.

Don’t forget your ears, too! Ear lobes are very sensitive and need protection. For those of you with scalp involvement, it is best to consult with your dermatologist who will recommend what sunscreen products are best for the scalp. Hats are advisable when venturing outside. Solid hats…not straw as the sun’s rays will stream through the weaves and cause damage! Take extra care with the “driver’s arm” — you know, your arm that is exposed to the sun when you’re driving? The sun’s rays are intensified through the glass windows. Best to be sure you are either wearing long sleeves or extra sunscreen. If you are going in the water, sunscreen needs to be reapplied often.

UV radiation also impairs the skin’s immune system in alarming ways. Sun exposure reduces the number of watchdog cells that help recognize and respond to antigens, and alters their function so they are as effective as dozing prison guards. “This effect on immune suppression can set in even before a sunburn,” Dr. Baron said. Reference: http://www.nytimes.com/2009/05/14/fashion/14SKIN.html?pagewanted=all&_r=0

Remember, when you need us we are always in your corner!

Studies have shown that there is a mind-body connection. It is known that stress can cause headaches, muscle aches, tummy aches, and blisters! For those affected by pemphigus and pemphigoid (P/P), when your stress levels are high, the antibodies know when it is time to come out and play. Horrors! It is easier said than done to remain calm and stress-free.

Have you experienced when you have a headache and you worry more about something and the headache gets worse? That is an example of the mind-body connection.

The brain signals the immune system, and we never know until after it happens. In order to ward off these signals, it is important for patients to remain even-minded. HA! You say! You’re right! However, there are ways for us to get better at this. It just takes practice.

Meditation can be very helpful. Even if only for 5 minutes at a time. Never feel that you must sit in a lotus position and keep stiff for an hour! That is not what meditation is about!

There are a lot of meditation videos on YouTube that you could take a look at. Just type in the word “Meditation” and a lot of suggestions come up!

Breathing exercises are a great way to help keep your blood pressure down. They help to bring a sense of calmness to envelope you. Essentially, you are inhaling slowly to a count of 10 or 20 and holding the breath for 10 or 20 and then exhaling slowly for 10 or 20. When you exhale, think of a happy word (like an affirmation) ie: joy or peace.

Deciding whether you should continue working or go on Social Security Disability is a tough decision. It can add to your stress level and worsen your disease activity. Before you rush into any decisions you should take inventory of how you are feeling physically, emotionally, and spiritually. Your job or career can have a significant impact on these aspects of your health. It’s important to understand how your job is affecting you. If you feel like you need to be on disability you should consider the following:

Will you be on long-term or short-term disability?
How will it affect your recovery and ability to reach remission?
How will it affect your insurance coverage and drug costs?
How will affect you financially?

Once you have decided, contact your physician and let them know that you need their assistance in the process. Your physician will need to provide information that confirms that your condition is severe and that you can’t do the work you previously did due to your condition. Apply immediately at www.ssa.gov so you can start the process.

Both you and your physician will receive a health questionnaire about your condition. Make sure that you and your doctor list all impairments that prevent you from working including medication side effects. Be aware that an interview may be held to determine your health condition. Keep copies of all your paperwork, health records, and track your conversations. Get to know your case worker as they will have influence in the decision process.

In many cases Social Security Disability claims can be denied the first time. Don’t let this discourage you! You can always file an appeal with additional medical information that can substantiate your claim. The IPPF can also help provide information about the disease that may help educate individuals regarding the severity of the disease.

Bullous Skin Disorders are included under listed impairments and in many cases Quick Disability Determinations (QDD) can be made depending on the severity of your disease. Receiving benefits, like your disease, take time so the sooner you apply the better! Although the process may seem daunting, your health may depend on advocating for yourself.

Don’t be afraid to contact the IPPF if you have a question or just “Ask a Coach”! Remember, when you need us, we’re in your corner!

As a Peer Health Coach with the IPPF, I am often reminded how fortunate that I am to be able to speak with so many individuals who lives have been affected in so many different ways from Pemphigus and Pemphigoid. I am able to take these collective experiences and pass them on to others in the form of recommendations, suggestions and advice. Even more amazing is the fact that the IPPF has four Peer Health Coaches doing this simultaneously!

This year your coaches have collectively worked with over 200 people answering questions, looking for physicians, helping with problems, providing educational information and providing peer support. Your coaches often discover fantastic “pearls” of information and have become great resources for all of us managing our conditions. To help pass along some of this great information we have created “Coaches Corner”, where your coaches can share knowledge about Pemphigus and Pemphigoid to help you improve.

Recently, I had some one ask me about being a blood donor which was something that I had done regularly prior to being diagnosed and had often wondered if I would be able to do it again. I found that according to the American Red Cross, you are not eligible to donate blood if you have some types of generalized autoimmune disease including systemic lupus erythematosus and multiple sclerosis (Since Pemphigus is so rare it is not mentioned). They also provide the following guidelines:

“To give blood for transfusion to another person, you must be healthy,
be at least 17 years old,
weigh at least 110 pounds,
and not have donated blood in the last 56 days.”

“Healthy” means that you feel well and can perform normal activities. If you have a chronic condition such as diabetes or high blood pressure, “healthy” also means that you are being treated and the condition is under control. Other aspects of each potential donor’s health history are discussed as part of the donation process before any blood is collected. Each donor receives a brief examination during which temperature, pulse, blood pressure and blood count (hemoglobin or hematocrit) are measured.”

So based on those guidelines, I would not recommend giving a blood donation unless it were for your own use. I would, however, check with the local blood collection agency you are considering just to make sure.

Although I was slightly disappointed with what I found because I was hoping that I would be able to give blood, the knowledge that I gained by doing a little research was helpful. I also found some satisfaction in knowing that I can donate blood to help with Pemphigus and Pemphigoid research. Perhaps that is the best way to donate blood as someday it may lead to a cure!

Thanks for all your support,

Marc Yale
IPPF Certified Peer Health Coach

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Here are some tips on how to appeal: