This is a horrid disease. You have found that the science community has a lot of information about it in great detail. They also have had a lot of money dumped into it for a long time. It is hard to believe that they haven't come close to a cure. Maybe this new generation of bio-engineers with genetic engineering can solve this problem.
I feel as with most diseases that they can care less about a cure. Yes, there is research being done, but there are many researchers who live of of their grants. A portion of their grants can be allocated to "living expenses" to allow them to do full time research. So the researchers do not want a cure any more than the pharmaceutical companies want a cure. If a cure is found their grants dry up. Therefore the researchers are always making new discoveries to keep the grants coming in and they are always getting close to a cure but the cure never materializes. Just look at all the money that has been dumped in to cancer research, yet every cure shown to work has been suppressed.