Tag Archives: pemphigus

Todd Kuh and Marc Yale

On September 26th Todd Kuh and Mariah Lowinske, two patient advocates with Pemphigus Vulgaris, and I attended the American Academy of Dermatology Legislative Conference in Washington DC. As a member of the Coalition of Skin Diseases, the IPPF sends advocates to this conference annually so we can learn about the latest initiatives prior to lobbying Congress for support for treatment and research.

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In a previous Coaches Corner I have given prednisone tips. It is a good time now for an update as there are new patients who are diagnosed and who are leery of the side effects that can come from taking a steroid treatment.

No one chooses to take prednisone as a medication.  However, it is used frequently for a variety of medical conditions, like pemphigus and pemphigoid (P/P). Prednisone is often used as the first line of defense against P/P. It works rather quickly and is effective in diminishing disease activity.

To learn more about prednisone, how it is used, what precautions to take before taking it, dietary suggestions, and side effects please go to this link from the U.S. Library of Medicine: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601102.html

A few of the side effects from taking prednisone can be:

Headache, dizziness, difficulty, falling asleep or staying asleep, extreme changes in mood, changes in the way fat is spread around the body, extreme tiredness, weak muscles, and more.

Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

vision problems, eye pain, redness, or tearing, sore throat, fever, chills, cough, or other signs of infection, depression, upset stomach, lightheadedness, shortness of breath(especially during the night), swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs, difficulty breathing or swallowing.

Please note that not everyone experiences every side effect and that even taking treatments like aspirin can come with side effects.  Everyone has his or her own unique physiological makeup. Therefore, while experiences with prednisone may be similar, they are not exactly alike.

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

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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!

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Dear pemphigus & pemphigoid Community,

As you know, the IPPF and the rare disease community have been working with Congress to advance the 21st Century Cures Act (HR 6). This legislation contains billions in new funding for research along with critical incentives to develop treatments. In July, the 21st Century Cures Act passed the House with wide bipartisan support and it is now up to the Senate to pass their own version of the legislation, called “Innovation for Healthier Americans“. Unfortunately, the Senate initiative has stalled and we are concerned that additional delays could derail the entire bill.

The IPPF is partnering with patient advocacy groups across the country to hold a day of action to call the Senate and urge them to prioritize Innovation for Healthier Americans – a delay in legislation is a delay in treatment for patients.

We are asking you to call you Senators today to convey this message and to let them know that patients can’t wait! Thank you for your all of your support and for taking action. The entire pemphigus & pemphigoid is counting on you!

Please use this sample script to help you with your call and the attached list to contact your Senators.

Sample Script:

My name is XXXX from [your city/state] and I represent the [IPPF and/or pemphigus or pemphigoid].

[Briefly explain the IPPF and/or your disease].

I’m calling today to urge Senator XXXX to prioritize Innovation for Healthier Americans. Its companion legislation in the House includes vital funding for the NIH & the FDA and incentives that will dramatically boost the number of treatments for rare disease patients.
Please support the passage of the Innovation for Healthier Americans legislation this year. A delay in legislation is a delay in desperately-needed treatments. Patients simply cannot wait. [Provide your contact information if you wish for a response from your Senator].
Thank you so much for your consideration and your leadership.

*Senate phone numbers are listed below:

Alabama                SHELBY, Richard @SenShelby (202)224-5744                     SESSIONS, Jeff @SenatorSessions (202)224-4124

Alaska                     SULLIVAN, Dan @sendansullivan (202)224-3004                *MURKOWSKI, Lisa @lisamurkowski (202)224-6665

Arizona                  FLAKE, Jeff @JeffFlake (202)224-4521                                  McCAIN, John @SenJohnMcCain (202)224-2235

Arkansas                BOOZMAN, John @JohnBoozman (202)224-4843              COTTON, Tom @SenTomCotton (202)224-2353

California               BOXER, Barbara @SenatorBoxer (202)224-3553                FEINSTEIN, Dianne @SenFeinstein (202)224-3841

Colorado                *BENNET, Michael @SenBennetCO (202)224-5852           GARDNER, Cory @SenCoryGardner (202)224-5941

Connecticut          BLUMENTHAL, Richard @SenBlumenthal (202)224-2823 *MURPHY, Chris @SenMurphyOffice (202)224-4041

Delaware               CARPER, Thomas @SenatorCarper (202)224-2441             COONS, Christopher @SenCoonsOffice (202)224-5042

Florida                    NELSON, Bill @SenBillNelson (202)224-5274                       RUBIO, Marco @SenRubioPress (202)224-3041

Georgia                  *ISAKSON, Johnny @SenatorIsakson (202)224-3643        PERDUE, David @sendavidperdue (202)224-3521

Hawaii                    HIRONO, Mazie @maziehirono (202)224-6361                   SCHATZ, Brian @SenBrianSchatz (202)224-3934

Idaho                      CRAPO, Mike @MikeCrapo (202)224-6142                         RISCH, James @SenatorRisch (202)224-2752

Illinois                    *DURBIN, Richard @SenatorDurbin (202)224-2152          *KIRK, Mark @SenatorKirk (202)224-2854

Indiana                   COATS, Daniel @SenDanCoats (202)224-5623                    DONNELLY, Joe @SenDonnelly (202)224-4814

Iowa                       ERNST, Joni @SenJoniErnst (202)224-3254                          GRASSLEY, Chuck @ChuckGrassley (202)224-3744

Kansas                    MORAN, Jerry @JerryMoran (202)224-6521                      *ROBERTS, Pat @SenPatRoberts (202)224-4774

Kentucky               *McCONNELL, Mitch @SenateMajLdr (202)224-2541      *PAUL, Rand @RandPaul (202)224-4343

Louisiana               *CASSIDY, Bill @BillCassidy (202)224-5824                         VITTER, David @DavidVitter (202)224-4623

Maine                     COLLINS, Susan @SenatorCollins (202)224-2523                KING, Jr., Angus @SenAngusKing (202)224-5344

Maryland               CARDIN, Benjamin @SenatorCardin (202)224-4524           *MIKULSKI, Barbara @SenatorBarb (202)224-4654

Massachusetts      MARKEY, Edward @SenMarkey (202)224-2742                  *WARREN, Elizabeth @SenWarren (202)224-4543

Michigan                PETERS, Gary @SenGaryPeters (202)224-6221                   STABENOW, Debbie @SenStabenow (202)224-4822

Minnesota             *FRANKEN, Al @alfranken (202)224-5641                          KLOBUCHAR, Amy @amyklobuchar (202)224-3244

Mississippi             COCHRAN, Thad @SenThadCochran (202)224-5054          WICKER, Roger @SenatorWicker (202)224-6253

Missouri                 *BLUNT, Roy @RoyBlunt (202)224-5721                             McCASKILL, Claire @McCaskillOffice (202)224-6154

Montana                DAINES, Steve @SteveDaines (202)224-2651                      TESTER, Jon @SenatorTester (202)224-2644

Nebraska               FISCHER, Deb @SenatorFischer (202)224-6551                  SASSE, Ben @SenSasse (202)224-4224

Nevada                  HELLER, Dean @SenDeanHeller (202)224-6244                 *REID, Harry @SenatorReid (202)224-3542

New Hampshire   AYOTTE, Kelly @KellyAyotte (202)224-3324                       SHAHEEN, Jeanne @SenatorShaheen (202)224-2841

New Jersey           BOOKER, Cory @CoryBooker (202)224-3224                      MENENDEZ, Robert @SenatorMenendez (202)224-4744

New Mexico         HEINRICH, Martin @MartinHeinrich (202)224-5521           UDALL, Tom @SenatorTomUdall (202)224-6621

New York              GILLIBRAND, Kirsten @SenGillibrand (202)224-4451         *SCHUMER, Charles @SenSchumer (202)224-6542

North Carolina     *BURR, Richard @SenatorBurr (202)224-3154                   TILLIS, Thom @SenThomTillis (202)224-6342

North Dakota       HEITKAMP, Heidi @SenatorHeitkamp (202)224-2043        HOEVEN, John @SenJohnHoeven (202)224-2551

Ohio                       BROWN, Sherrod @SenSherrodBrown (202)224-2315     PORTMAN, Rob @PortmanPress (202)224-3353

Oklahoma              INHOFE, James @jiminhofe (202)224-4721                          LANKFORD, James @SenatorLankford (202)224-5754

Oregon                  MERKLEY, Jeff @SenJeffMerkley (202)224-3753                WYDEN, Ron @RonWyden (202)224-5244

Pennsylvania         *CASEY, Jr., Robert @SenBobCasey (202)224-6324          TOOMEY, Patrick @SenToomey (202)224-4254

Rhode Island         REED, Jack @SenJackReed (202)224-4642                     *WHITEHOUSE, Sheldon @SenWhitehouse (202)224-2921

South Carolina      GRAHAM, Lindsey @GrahamBlog (202)224-5972               *SCOTT, Tim @SenatorTimScott (202)224-6121

South Dakota        ROUNDS, Mike @SenatorRounds (202)224-5842               *THUNE, John @SenJohnThune (202)224-2321

Tennessee             *ALEXANDER, Lamar @SenAlexander (202)224-4944      CORKER, Bob @SenBobCorker (202)224-3344

Texas                      *CORNYN, John @JohnCornyn (202)224-2934                   CRUZ, Ted @SenTedCruz (202)224-5922

Utah                      *HATCH, Orrin @SenOrrinHatch (202)224-5251                LEE, Mike @SenMikeLee (202)224-5444

Vermont               *SANDERS, Bernard @SenSanders (202)224-5141            LEAHY, Patrick @SenatorLeahy (202) 224-4242

Virginia                  KAINE, Tim @SenKaineOffice (202)224-4024                      WARNER, Mark @MarkWarner (202)224-2023

Washington          CANTWELL, Maria @SenatorCantwell (202)224-3441       *MURRAY, Patty @PattyMurray (202)224-2621

West Virginia        CAPITO, Shelley Moore @SenCapito (202)224-6472         MANCHIN III, Joe @Sen_JoeManchin (202)224-3954

Wisconsin              *BALDWIN, Tammy @SenatorBaldwin (202)224-5653    JOHNSON, Ron @SenRonJohnson (202)224-5323

Wyoming               *BARRASSO, John @SenJohnBarrasso (202)224-6441      *ENZI, Michael @SenatorEnzi (202)224-3424
*indicates Senator is a Member of the Senate Health, Education, Labor, & Pensions (HELP) Committee or holds a leadership position

THANK YOU FOR TAKING ACTION!