"Not getting our HU won't kill us, but for many Americans needing medications, this nonsense will be fatal."

Without HU, ET patients run a higher risk of strokes and lung or heart clots that could be fatal or debilitating.

Actually, for me taking HU is a matter of life or death as my platelets go sky high without this medication. Early last year (2024), soon after diagnosis but before I’d started HU, my platelets went up to 2,500,000. That’s 2.5 million, not thousand. I was very sick and had very large hematomas in my left leg and hip which put me in the hospital twice with severe pain. Pain was so severe I needed narcotics, which I had never before had in my life and it scared me to take them, but it was only needed temporarily. But I was in bed for nearly two months, could barely walk, , couldn’t drive, couldn’t do laundry, couldn’t cook, couldn’t use the toilet because I couldn’t sit down (so I used adult pull-ups), and I had to have a lot of help. The HU slowly brought the platelet count down, but it took months for the hematomas to go down all the way as my body reabsorbed the blood into my bloodstream. My hematologist said it looks like I tend to bleed instead of get clots with high platelets. So yes, I’m very concerned about continued access to hydroxyurea.