HawaiiJ

Yes, I was diagnosed while in service. I was also taking Enbrel while in service thanks to my active duty Dr. He was instrumental in getting the correct diagnosis and not giving up on me during the battle. I too was misdiagnosed with eczema and luckily this was resolved once and for all via a "punch biopsy" and further confirmation during a referral visit to an off base doctor in Naples It. The initial 30% diagnosis was granted as a result of the Comp/Pen VA Exam, granted for scarring and coverage. Should have been at 60% because of the clear indication of "immune suppressive therapy" for 12+ months (Enbrel). The VA doc did state Enbrel use but not the length of time I was taking it. Luckily, after I got out I lived in Boston and selected to use the tricarre alternative "US Family Health Care" system and made the switch from Enbrel to Stelara at no cost. In 2011, I moved to Thailand and started using the VA's Overseas Tricare". Basically, it was pay upfront and get reimbursed 30-45 days. This allowed me to continue Stelara use with no gaps. When I returned to the USA in Jan 2015, I reached out to the VA to continue the Stelara and got nothing but support from the doctor at the Gainsville VA. But the Pharmacist was the hurdle, they insisted on me trying Humeria because their protocol called for a double failure on 2 different biologics before starting on Stelara. After getting the initial denial I asked to speak the Pharmacy Department to try to discuss the rational. TO my surprise, I got the head of the department. He stated his case and I did mine too. I got lucky. Reason was I had been on Stelara 5+ years and the VA had been paying the bill already for nearly 4 years. With this explained my request for Stelara was granted and he stated he had a hard time taking something away from me that was working and the VA was paying for already. As for advice, I'm not experienced in working to create the nexus between in service/after service or the incorrect diagnosis. But I would recommend to have the doctor you use for the claim to make sure it clearly states "immune suppressive therapy" for 12+ months and coverage if possible. One of my main points of concerns with the VA exam while taking Enbrel/Stelara is the treatment (in my case) eliminates almost all indicators I have Psoriasis and make it impossible for a Dr to make an observation rating/finding that favors a veteran in a fair manner. Never have understood the logic of this dilemma. Good luck with the advocate, they were helpful in getting me in contact with the Pharmacy department and the head resulting in the result I was looking for. I'm sure I'll have to battle them when Stelara becomes ineffective.

Another quick update. I'm back in Florida and had a experience getting indoctronated into the VA medical center for care for this Psoriasis problem. I went through the PCP in Lake City (Very good experience) and got referred to Gainsville to see a dermatologist. The goal was to get into the system before my next shot of Stelara was due. During the Dermatology consult, the Doctors were great, very pleased I had extensive medical records on the history of my Psoriasis battles. Dueing the consult my point was I wanted the VA to continue to pay for my Stelara injections since they had been paying while I was living overseas in Thailand (Via the FMP program). The Doctor agreed, this makes sense and we proceeded to make it happen. I had provided 3 years of VA Explaination of Benefits proving the VA had been paying the Stelara bill for 3 years and I had been on Stelars for over 5 years. They the Doctor called me 3 days later and said the Pharmacist denied the request because I had only failed one other injectable (Enbrel) and not the Humira option. So the Pharmacist approved a 90 day test of Humira to see how I would respond to the change. Needless to say I was not over-joyed. After all, I had been taking Stelara for 5+ years and the VA footed the bill for 3 years. I was at a loss as what to do..I had very little options in terms of how to change this decision. During the Veteran's Symposium I attended here in my local town I spoke to the VA folks from the VA Clinic in Tallahassee. After expressing my frustrations, it was mentioned I should call the patient advocate to discuss the change from Stelara to Humria. So when I contacted the Patient Advocate, I requested some one from the Pharmacist call me to make sure they fully understood my situation (Taking Stelara for 5 years/VA paying for it for 3 years). I got a call form the head of the Pharmacy department who listed to my explaination and reasoning and desire to not changing medication after 5 years of success. He listened and agreed and said there was no need to change and he would approve the Stelara injections. The Dermatology doctor called again and we talked and he understood my position and was supportive of the decision and my actions. Now I'm getting the Stelara via the VA back here in the USA. Needless to say, I've been very lucky during my transition back to the USA. For me the VA care has been very good with no complaints...

Here's an update. After waiting for 829 days for the Boston RO to certify and send my case to the BVA so I begin the wait process all over again I decided to call the RO in Boston and ask for an update on my appeal. The reply was to call the BVA who in-turn said the case was at the Boston RO and not the VA. So, I called the RO again and now the answer was no more status (in terms of days expected to wait for sending to the BVA) because I had went past the 760 day counter I had been working with. At least they were honest at this stage of the game. So, I'm left in the dark, no update information from the RO other than to wait! So, I went to a local Veteran's Symposium of sorts put on by my local county bringing Veteran related agencies to talk and learn about what they offered. In addition to the agencies, one of my US State Senators had a member of his team on hand to field issues and questions. So, I had an idea. Since I was totally frustrated with the RO's response and felt like I was just left hanging in the wind so to speak I thought it could not hurt to speak to my Senator and ask for any help possible. Once I was put in touch with the right person who handles VA related issues and explained my case and problem and wait, she said she would put in a Congressional on my behalf and see how the VA would respond. The hope was to get an update on my appeal, nothing more. After a week, I got a reply from the Senator's team, and the VA acknowledged my case looked to be overdue in terms of being certified and sent to the BVA for the next step. She stated the VA would look into why the appeal was delayed and I should expect something back on the update within 3 or so weeks. Then, last week I got an envelope from the VA containing a copy of my C-File I had requested over 10 months ago. I thought, man this is strange how something happened based on a simple request (for the C-File) from 10+ months ago. Next, I logged into the E-Benefits and noticed my case had been updated to some extent. Actually a great deal of change but I was very concerned because it was the case was complete at the BVA and the decision had been made and was being processed for mailing back to me. Wait, I fully expected to travel to the BVA hearing to get the opportunity to present my case before a VLJ. But no, it looked like the case was over, decision was made. No case docket number was ever issued to me, no notice of anykind. I did notice that the case had received correspondence on 23 Mar 2015 and the decision was made on 3 Apr 2015. I contacted the VA RO yesterday and no luck on getting the decision information over the phone. Today I got an email from my Senator's representative along with a phone call. The case was over, decision was made. All positive in my direction. The rating for Psoriasis was changed/increased to 60%, overall rating raised to 90%, the decision was also retroactive back to my original claim date so I had a check for the retroactive difference as well. All in all a good day.

63Sierra, I totally agree the process is flawed from the beginning. For sufferes of Psoriasis the last thing you want to have is a full-on breakout and manifestation of the illness at anytime. In my situation believe the C&P for Psoriasis is completely weighted towards the VA's side. Here's why. Consider that I have the condition on most of my body and I am currently on a drug like Enbrel that provides outstanding results and almost completely contains your condition and it then appears minimal in the eyes of a C&P examiner. At the point of the C&P, If you are involved in a therapy routine and it works you don't get a fair exam, you get one when your condition is at the best and the C&P examiner will only see minimal symptoms they are looking for. Because you are able to control your condition at that time, the C&P examiner will report a lesser condition than you actually have and not a honest one (I'm not saying the C&P Examiner is being dishonest). A claimant would be better to go off any therapy for 6 months and suffer so the C&P examiner would see the real status of your condition and thus give an honest account of the condition. Like I said, the whole thing is flawed for Psoriasis patients in my opinion. I also agree the route the reviews and appeals takes is not fair. At this point I have elected to have a in-place BVA hearling because of living overseas and lack of trust in the AMVETS office in Boston. I can't do the video version of the hearing and it is worth it to me to fly back to the US and have this hearing in person. Mainly because of the delays and clock-resets that happen at each stage of the review path. It's worth the cost of a plane ticket to make the trip and solve this thing once and for all. Can't afford to have the clock reset again and start all over. Currently, my appeal is at the RO (Boston), the same office that made the initial decision and the same office that made the NOD decision. I highly doubt the RO will ever change their decision and hope I just go away and give up. Here's the comical and totally sad fact about the current status. The last time I contacted the VA to inquire about my case, they said the next step was the VBA for an assignment of hearing date. It was stated it would be at the RO for 760 or so days prior to being sent to the VBA in DC. One has to wonder why, the RO who has twice ruled wrong (in my opinion) should get to hold my case in limbo for another 760+ days only to just send it down to the VBA in DC for the next step. This alone should be a crime, it is in my opinion a major example of what is wrong with the VA system. These cases (in this status) are not the ones that get reported in the news reports as being reduced. These cases just drop off the charts and sit and the public doesn't even understand the truth of the matter and how they take years to be considered. With the increase of funding and effort made by the VA , one should expect better results and performance from the effort. (Again, my opinion). Thankfully, I'm only 48 and can (hopefully) wait them out and prevail. Another good thing is this issue should be retroactive back to my initial filing and if the ruling goes in my favor the payment would be retroactive as well. Keep in mind, my point of disagreement is with the "OR" portion of the ruling that warrants the higher 60% rating. And the fact I have been taking the Enbrel and Stelara constantly since 2007. I think they have overlooked or disregarded this point.

63Sierra, I agree I need to get the C&P file from the VA. I have spoken to the local VFW service officer and he's working on assisting to get the information from the VA.

Hi everyone, Just wanted to get some opinions on how you might think I will fare for my VBA hearing when it finally happens. I don't think this is a complicated issue and can't believe it has gotten to this point but I can understand why the system is backed up to the point it is. The attachments below are from the NOD decision I received from the VA, it is different from the initial decision only because of the reference to my use of Enbrel. The original decision did not reflect this even though it was clearly in my official medical records reviewed for the initial decision. Here are a few of the simple facts. - At the time of the initial filiing, I had been on Enbrel for over 12 months - I stopped taking Enbrel in March 2010 and began taking Stelara - Until July 2011, the cost of both medicines were funded by (Active Duty/Express Scripts or Tricare) - In November 2011- Present, it have been paid via the VA FMP (I Live in Thailand) - So I have been on Enbrel or Stelara constantly since Nov 2007 - Initial decision was at 30%, NOD decision continued this rating of 30% My disagreement is with this portion of the decision: "A higher evaluation of 60 percent is not waranted unless evidence shows more than 40 percent of the entire body or more than 40 percent of exposed areas affected, or; constant or near-constant systemic therapy such as corticosteroids or other immunosuppressive drugs required during the past 12-month period." In the decision it states how and what warrants the higher rating of 60 percent. Both Enbrel and Stelara are immunosuppressive drugs based on the information on the drug manufacturer's website along with the FDA's website. The paragraph above (especially the highlighed portion) says "OR" not "and" or that you have to meet the entire portion of the paragraph to hit the threhold defined for the 60 percent. I feel based on the drugs I have been on since Nov 2007, I clearly meet the requirements of the "or; constant or near-constant systemic therapy such as corticosteroids or other immunosuppressive drugs required during the past 12-month period." portion of the requirement and should be elligible for the 60 percent rating for this condition if the evidence was evaluated properly. Both drugs at the time were/are fairly new and are not the easiest to get insurance companies to approve for use and maybe the case evaluaters at the time did not really understand what the drugs are classed as in terms of the immume suppressive effect? Please let me know what you think. Am I thinking correctly is that I should be at 60% vs 30% based on the information provided here? Thanks in advance for taking the time to consider these questions.

I just made another call to the VA for clarification and here's the answer. My 710 day waiting period is based on the day they received the Form 9, 11/23/2012. Then my file will be forwarded to the BVA for the docket and I assume await until it is assigned a hearing date. The lady I spoke with said once it goes to the BVA it is in "LIMBO" (she actually used the word limbo) and ther's no estimated number of days for it to clear the BVA hearing process. I have to say, I expect to have this last for many years and the only saving grace is everything related to this is retroactive in terms of potential money. Another depressing fact is my case sits at the RO and they already had the file and denied the appeal prior. So now they get to just hold onto it for nothing since I asked for a BVA in DC and not at the RO. Anyone know why? Over the next few months, I'll put together a powerpoint type briefing of what I would present to the BVA and let the congregation here make a call as to whether I'm wasting my time or not. It might take me a couple of months because I'm in school and have many projects along the way.

The Ebenefits site is working again and here's my timeline below. Last week when I contacted the VA, I was told the normal number of days for my type of appeal is currently at 710 calendar days to get onto the BVA docket. I have no idea which date the VA used to start counting, any one know the correct answer by chance? I'm assuming the last date plus 710 days maybe? The last time I was counting days with the VA they busted the "Calendar" day count and conveniently turned the story around and said it was work days not calender days. Who knows when my appeal will come up for BVA assignment.

I got curious last week and called them to check on a couple of things. In E-benefits they still have "AMVETS" as my POA even though the POA had been revoked in Dec 12, they said I had no POA and it would just show the last POA info I had until I eleceted to have another POA. I asked about the leadtime on cases similar to mine (waiting for BVA docket date to be assigned. The reply was 710 days precisely which I find comical as to how they can predict it down to a specific number of days. I asked for specification of calendar or work days and I was told calendar days. I just tried to get a copy of my overall timeline and had another comment but the EBenefits website is not working well and I can't access my appeal information. I'll try again in a bit and post it and comment further on what I think about my next move (not that I really have one) other than sit and wait for the 710 days to roll around.

71M10, On both the initial and NOD decisions Embrel use was noted and it was stated in the decision I received. I whole heartedly believe both the Embrel and especially Stelara are relatively new in a sense that the decision makers have not seen thousands of cases where these 2 drugs are being used. I don't believe they know the drugs Embrel or Stelara are automatically linked to immunosupressive therapy unless the C&P exam report spells it out. There was no DRO, just straight to the BVA hearing. I really find it comical the VA is actually paying for my injections of Stelara but seem to miss this when it comes time to decide if I'm taking immunosuppressive drugs therapy. It is expensive, about $ 8600 every 12 weeks. I'm getting reimbursed via the VA's FMP program with no questions so far. I front the cost, then get reimbursed prior to taking the next injection.

Folks, Thanks for the replies. I decided to go the BVA route and requested an hearing in Wash DC vs Boston MA where the original claim and appeals were filed. The reason for choosing DC is it is cheaper to fly to DC than Boston from here in Thailand where I live. I'm expecting a multi year wait for this BVA to happen and that's ok since I have time to wait. I tried to find some information on the case decisions referenced by Bluenote but failed. Hopefully I'm heading in the right direction. Other than waiting for the BVA, I just need to close one small loophole. I have been at odds with the AMVETS team in Boston since the start of my claim. I have tried to remove them on 2 occasions and can't seem to get the job done. The AMVETS POC in Boston will not respond to my email asking how to revoke the POA they have. It should be noted, AMVETS team has not filed or acted on mybehalf and I have filed the initial claim and the appeal myself. The ball was dropped early on in the claim process and I just decided to go solo of the whole effort. How would one go about revoking the POA and getting the VA to acknowledge this action?

Hello, I’m looking for some guidance and understanding on one of the Service Connected issues I have. I’ll apologize in advance if I get long winded but will do my best provide the timeline and decisions along the way. Here’s a simple timeline. Jan 2009 - Retired USAF Jun 2009 - VA Received initial VA Claim for Disability Dec 2009 - VA Examination at the VAMC Boston May 2010 - Notified of Decision Apr 2011 - NOD Received at VA Oct 2012 - NOD Decision sent to Claimant I agree with all my SC decisions made by the VA with one exception: PSORIASIS, initially determined to be 30% disabling. My opinion based on evidence provided, it should have been 60%. The May 2010 decision was for 30% disability for Psoriasis was based on 20% of the body and the it goes on to include all the other technical terms related to a Psoriasis decision. The decision noted that my Psoriasis is treated with 50 milligrams of Embrel twice per week which has been effective. The Embrel injections started in Nov 2007. This was after countless treatments with all the cream, suave & solution therapies available. It also included a two regimens of Cyclosporine which worked wonders until stopped and the Psoriasis conditions came back with a vengeance. FYI - My issue with Psoriasis date back to 1994. The following paragraph was included in the decision as well in the initial decison: “an evaluation of 30% is assigned from January 1, 2009. An evaluation of 30% is granted for evidence showing 20 to 40 % for the entire body or 20 to 40% of exposed areas affected, or; systemic therapy such as corticosteriods or other immunosuppressive drugs required for a total duration of six weeks or more, but not constantly, during the past 12-month period. A higher evaluation of 60% is not warranted unless evidence shows more than 40% of the entire body or more than 40% of exposed areas affected, or; constant or near-constant systemic therapy such as corticosteriods or other immunosuppressive drugs required during the past 12-month period.” That was the 30% decision and how to increase to 60% if warranted. My understanding of the decision was something had been missed on the immunosuppressive drug therapy-EMBREL. I had began taking Embrel in Nov 2007 which was nearly 18 months of use at the time I filed the initial VA Claim. Embrel is clearly described as an immunosuppressive drug on the drug manufacturers website and others related to Psoriasis info. My twice weekly injections were constant meaning this was the dosage and use prescribed by my doctor. I felt this was a clear miss on the VA’s part. Embrel was in use for longer that the “constant or near-constant systemic therapy such as corticosteriods or other immunosuppressive drugs required during the past 12-month period” threshold described in the VA decision. So, I decided to file a NOD, requesting the higher 60% decision based on the use of immunosuppressive drug therapy. I’m thinking this is easy, I state the obvious, provide clear dates with evidence and should be a simple correction to the 60% rating. Also, It should be noted between the initial decision and filing the NOD the Embrel stopped working and I began taking STELARA which also decreases and impacts your immunosuppressive system in a negative way too. All this information was provided in the NOD filing and it showed a continuous use of EMBREL and STELARA from Nov 2007 until the date of the filing. Well over the 12-month use threshold required for 60% rating. To date I’m still using STELARA and the VA is currently paying 100% the cost of this therapy via their Foreign Medical Program (VA-FMP). On 22 Oct, 2012 the NOD decision was received the VA decision was to maintain the 30% disability rating based on the exact same reasoning listed in the original decision and also the NOD decision included the same comments about what warranted a higher 60% rating which stated: “constant or near-constant systemic therapy such as corticosteriods or other immunosuppressive drugs required during the past 12-month period”. No progress was by filing the NOD. The VA came to the same decison without clearly stating Embrel use was involved in the decision. Ok, thats the story here’s a few questions I need help on understanding if anyone has a recommendation. I have 60 days to make a decision to appeal, disagree or request a hearing in person. 1. What qualifies as: constant or near-constant systemic therapy such as corticosteriods or other immunosuppressive drugs required during the past 12-month period? Does constant use as prescribed by doctor from 2007-present meet definition of constant or near-constant? 2. EMBREL and STELARA both suppress the immune system this is based on the drug information listed on the manufacturer’s sites. Why does this not meet the VA threshold for immunosuppressive therapy? 3. What am I missing? 4. Am I foolish for thinking I should be at 60%? 5. Would a BVA hearing be a mistake or am I chasing something I can’t catch? Sorry for the long version, hopefully I have provided enough info without clouding the issue too much. Looking forward to the replies. Thanks.