PAP Discussion Forum

Greetings to everyone, My father has been diagnosed with PAP back sometime in 2011. Initially, he was diagnosed with chronic myelitis leukemia in 2008 and is still taking Gleevec as a precaution. However, later testing showed he has PAP and his doctor is just watching him for the day he will eventually need WLL. I cannot deal with this negligence any longer as his respiratory activity has become worse this year. I have seen what this country's health care system is like first handed through my own experience of being neglected and mismanaged. *(At age 18 I had my gallbladder removed but was still experiencing pain over the following 5 years. I was told it was all psychological even though I was in the ER multiple times when the pain was overwhelming. I was on Medicaid in a town with a median income level of 45k (Bridgeport, CT). I flunked out of college. There was no way of concentrating on studies with the level of pain I was experiencing almost every night. I had to run away from home due to my difference in religious beliefs with my family as I was brought up in a cult, which I was able to realize during my college years. My last episode of pain landed me in a hospital that was in a high income town with a median income of 97k (Greenwich, CT). With one Upper endoscopy procedure, the hospital figured out my issue that the previous hospital couldn't figure out in 5 years. I haven't been back to an ER since.) I understood money is a vital resource for elongating one's life and have pursued it as my life mission over the past 7 years of leaving home. In that time, the medical community's advance in finding an alternative treatment for PAP is a breakthrough in saving my father for me. I am now a commercial real estate broker in manhattan and learned much more on how this world operates. I am disappointed, but I guess it's life. I have been able to contact my family once again after all those painful years of being apart and have learned of the progress of my father's symptoms. I grew up watching him lash out in anger and fear of an inevitable death. I resented him when I was young but I understood the pain he's going through. I want to give him hope and strength to live at least 30 more years of life I know he has in him. Please, someone please tell me how I can go about getting GM-CSF treatment for my father in the New York/Connecticut region. My father's condition is progressing as he cant even walk a flight of stairs without experiencing shortness of breath. He is a first generation immigrant and have been working as an essential worker as a truck driver in these unprecedented times of the Covid19 pandemic. I cannot bare to know he's living a painful life any longer. I sincerely beg you, someone please tell me the way to get treatment. Sincerely, DMK

Based on the PR today it looks like Savara will continue to delay the trial until COVID has gone away. Listening to Badrul, the CMO of Savara, who was a director of the FDA, it is clear that the drug has a beneficial impact on PAP patients. IMPALA clearly shows that impact on PAP patients but the FDA is steadfast on P-Values, not patient outcomes. It will be years before Molgradex is in the hands of patients. FDA is really coming down hard on PAP patients in my view.

Wondering what the PAP community is thinking about COVID vaccine(s)? Are PAP patients generally considered to be immune-compromised? If so, is the Pfizer vaccine okay - safe for PAP patients? I'm hearing it has not been tested on immune-compromised subjects. What about the Moderna vaccine?