There are a number of great responses in this thread, but the fact that this discussion is even happening is, to me, pretty frustrating and dispiriting. The government, NIH included, has long engaged with the community in bad faith. I find it frustrating that (1) advocates continue to engage with the government as if they are not acting in bad faith and as if their goal is not to contain patient demands as much as possible and (2) the community responds to excuses made in bad faith as if they are sincere, which ends up dividing the community and achieving the ends for which they were made.
You may disagree that the government engages in bad faith, so I want to make a couple points on that front.
First, for some historical perspective, here is a link to some CFSAC testimony I wrote and read six years ago, in October 2012, that discusses many of the same flacid excuses NIH is still making, which patients are discussing in this thread:
That NIH was making the same excuses 6+ years ago, when they were engaging even less than they now are, should make it pretty obvious that the excuses made during the recent meeting were not made in good faith.
Second, the excuses made and all the complexity involved in thinking through how change might happen has the effect of moving the goalposts and distracting patients from the big picture. The community has gotten many of the small things that advocates have asked for, but it should be pretty obvious that while some boxes have been ticked off, there is still no urgency, still no real commitment to make change, and still far too little empathy and transparency in engaging with patients. We are being managed and while that management looks more benevolent now that the community has a bit more political capital, the fact that these excuses are still being made demonstrates not just a lack of urgency and commitment, but a lack of empathy. It's disgusting that they would trot out this excuse about the field being too nascent to justify investment when they made it so. Our lives are hanging in the balance. As someone in this thread noted, we are getting sicker and slowly dying while they trot out the same old self-serving bullshit. They don't believe that it's not the right time to invest; they know that we'll accept that excuse, because we have in the past, and we don't have the political capital to do anything but.
If they wanted to make change, we would see it and we would feel it. They could issue an apology for how they've damned this disease and court the press to cover that apology. That would strengthen the hand of advocates into the future. They could lay out a multi-year plan that puts us at funding parity at some reasonable point down the road. They could spend political capital to break the supposed mold in how they approach the disease. @Michiel Tack covers this point well:
They're not engaging in good faith. They're managing us. Continuing to respond as if they're sincere divides the community and leaves it reactive to whatever new excuse is made. The whole reason I wrote the testimony above was because I was pissed off at watching various officials at CFSAC trot out new excuses each meeting and act like patients were just too naive and simple to understand that they were doing everything in their power to help us and that we were being unreasonable if we were anything but stoically patient. So, if you think patience is a reasonable response to this claim about funding, how many decades more should we wait?
You may disagree that the government engages in bad faith, so I want to make a couple points on that front.
First, for some historical perspective, here is a link to some CFSAC testimony I wrote and read six years ago, in October 2012, that discusses many of the same flacid excuses NIH is still making, which patients are discussing in this thread:
That NIH was making the same excuses 6+ years ago, when they were engaging even less than they now are, should make it pretty obvious that the excuses made during the recent meeting were not made in good faith.
Second, the excuses made and all the complexity involved in thinking through how change might happen has the effect of moving the goalposts and distracting patients from the big picture. The community has gotten many of the small things that advocates have asked for, but it should be pretty obvious that while some boxes have been ticked off, there is still no urgency, still no real commitment to make change, and still far too little empathy and transparency in engaging with patients. We are being managed and while that management looks more benevolent now that the community has a bit more political capital, the fact that these excuses are still being made demonstrates not just a lack of urgency and commitment, but a lack of empathy. It's disgusting that they would trot out this excuse about the field being too nascent to justify investment when they made it so. Our lives are hanging in the balance. As someone in this thread noted, we are getting sicker and slowly dying while they trot out the same old self-serving bullshit. They don't believe that it's not the right time to invest; they know that we'll accept that excuse, because we have in the past, and we don't have the political capital to do anything but.
If they wanted to make change, we would see it and we would feel it. They could issue an apology for how they've damned this disease and court the press to cover that apology. That would strengthen the hand of advocates into the future. They could lay out a multi-year plan that puts us at funding parity at some reasonable point down the road. They could spend political capital to break the supposed mold in how they approach the disease. @Michiel Tack covers this point well:
They're not engaging in good faith. They're managing us. Continuing to respond as if they're sincere divides the community and leaves it reactive to whatever new excuse is made. The whole reason I wrote the testimony above was because I was pissed off at watching various officials at CFSAC trot out new excuses each meeting and act like patients were just too naive and simple to understand that they were doing everything in their power to help us and that we were being unreasonable if we were anything but stoically patient. So, if you think patience is a reasonable response to this claim about funding, how many decades more should we wait?
