PNH and Ratings

Question:

I have a rare blood disorder called PNH and I have been rated 100% due to it. They want me to get a bone marrow transplant. If I do the transplant, can they take my rating away?

 

Jim's Reply:

Paroxysmal Nocturnal Hemoglobinuria (PNH) is similar to aplastic anemia in the way it affects you. Since PNH isn't directly referenced in The Schedule For Rating Disabilities, we compare it to similar listed conditions in The Schedule and we can use the ratings we find there. That's very common practice in rating disabling conditions that may not be specifically addressed in The Schedule.
 

For most of the rated Hematologic and Lymphatic conditions we'll see similar language: "A 100 percent evaluation for bone marrow transplant shall be assigned as of the date of hospital admission and shall continue with a mandatory VA examination six months following hospital discharge. Any change in evaluation based upon that or any subsequent examination shall be subject to the provisions of Sec. 3.105(e) of this chapter."
 

What this means is that yes, your ratings may (will probably) be lowered to reflect your improved condition after you receive a bone marrow transplant.
 

The final rating will depend on how well you're doing at the moment of your required 6 month post-transplant C & P exam. VA will rate you on what they call 'residuals' or the lasting effects of having had the disease and any effects from subsequent treatment. As is often the case with Hematologic and Lymphatic conditions, if you are 'cured' of your condition and you have no lasting physical scars or other disabling physical conditions, your temporary 100% rating will fall to 0%.
 

Many veterans argue that the pain, suffering and fear of death during the most active part of the disease and the treatment should leave them rated as 100% disabled even if they are proclaimed to be cured of the disease. The bone marrow transplant procedure in and of itself isn't a process that leaves one feeling confident about their health but VA doesn't take that into consideration under most circumstances. If the post treatment veteran feels that their mental health has been affected, filing another claim is the only way to achieve monetary benefits.
 

This is a serious disease and you shouldn't think of your final ratings when you consider taking recommended treatments. I'm all too aware that many veterans will delay or defer therapies that could cure their cancers and other such conditions for fear of losing that 100% rating but that's a real gamble with your life when we talk of PNH.
 

Were you to defer treatment for the sake of keeping your 100% rating a sudden worsening of your illness could be the last thing you'll have to deal with. My vote...do as your doctors recommend and deal with any ratings consequences later. Good luck.