This disease and this community has long been subject to the whims of much more powerful actors. We have been managed, politically, in the past and, while these events are potential signs of good faith and will hopefully result in actual change, we would be naive to not realize that the nature of our management by those still much more powerful actors will change as the community gains more political capital. Put another way, these changes may represent good faith, but they might also derive from the realization that the government is incredibly vulnerable politically in how it has mismanaged this disease over the last thirty years and that covering institutional ass now means actually giving patients some things we want. When the community has enough political capital, the government has to be seen to be doing more to have any semblance of plausible deniability.
Maybe this is not politically possible, but good faith, to me, starts with honesty and a frank, open, and widely disseminated apology to patients whose lives have been ruined by governmental incompetence and to researchers whose careers have suffered from their decision to dedicate themselves to this space. Even to the extent that a direct apology is not politically possible, that degree of honesty should be reflected in how our disease is discussed.
Consider the quote from Collins in today's Science article: "The attitude among many researchers has been 'maybe this is an unsolvable problem, let’s just work on something else,' Collins says. 'I’m happy to say we’re countering that attitude rather strongly here.'"
Is that an honest or accountable summary of how this disease has been perceived by researchers in related disciplines? Of course not. It shifts fault from the individual and the collective to fate.
I would like to see real commitment to this disease and real engagement with the patient community, and I am willing to believe that this is the start, but what I see is a long legacy of bad faith, obfuscation, and mismanagement and a patient community that remains far too vulnerable to the whims of other actors.