I would suspect prt of that pie went to the Middle East Respiratory Distress Syndrome research, because see, it becomes a global threat if not treated. I wonder how many millions it cost.
And there you have our problem. Nobody sees it as a problem to anyone except us. With AIDS, yes, people were dying, but also their healthy family and friends
believed AIDS patients were ill. Many, many healthy people were afraid of getting AIDS because no one was certain how is was transmitted. Even after it was determined that HIV is blood/sexually transmitted, there were plenty of healthy people who felt themselves at risk and therefore had some investment in discovering the nature of the disease and treatments. It was largely those healthy people who did the advocacy work. It was only later, when HIV could be detected before significant symptoms began, that sick (but functional) people became involved in advocacy.
We don't have a healthy population able to help with advocacy, or who are wealthy enough to pay our uncovered medical bills
and donate substantial amounts of money to our cause. We PWME and the very few who are supporting us are already at our physical, emotional, and financial limits just coping with the disease with almost no help from social services, the medical community, or the government.
No one who is healthy is afraid of catching it from us. The few family members who believe we are seriously ill are often swamped with the cost and effort of supporting us. The rest of our families, friends, and neighbors don't think we deserve their support, and they don't fear they might be the next person to come down with this dreadful illness. Thanks, Reeves and Wessley.
What we
do have that HIV/AIDS patients did not have is connectivity. The internet may be our savior because even the very sick among us can communicate at some level via the internet. It doesn't make the same impression as thousands of us marching on DC, but it can be powerful. We just have to manage our approach to meet our capability. I wish I knew how to do that.