tag:blogger.com,1999:blog-10081281.post2158915008052386159..comments2024-03-10T11:27:23.742-07:00Comments on At Risk for Huntington's Disease: Can we afford the costs of orphan disease treatments?Gene Veritashttp://www.blogger.com/profile/10911736205741688185noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-10081281.post-28807952793321981772014-07-22T23:46:30.280-07:002014-07-22T23:46:30.280-07:00I post this on my son's birthday. He has Hunti...I post this on my son's birthday. He has Huntington's Disease which he inherited from me. I will mention how devastating the dual diagnosis of us both was beyond description of the degree of agony it caused. This leaves two adult siblings also facing the extremely real and horrible possibility of also testing positive.How do you describe the level of fear and agony? There is so much talk about how much it will cost over a lifetime of the patient to treat them . This is only if a cure was available. There is very much talk about what it costs for research to even attempt to find the cure. There is much talk about how the money for research for a cure is often spent unwisely. I fully agree with the approach of P 4 medicine...PREDICTIVE, PREVENTIVE,, PERSONALIZED, and PARTICIPATORY medical approach to this disease. It must be fought against with compassion for it's victims and extreme commitment on every level!!! P 4 is a great start , but the greed of those who see an opportunity to make money at the expense of the patients by holding up research ,MUST STOP!!!I am suggesting PARTICIPATION in every way possible. I am also throwing down a challenge. You have my willingness to participate, ABSOLUTELY. The problem is how do you connect the suffering patient(and family) with personalized medicine and participation?Nancy Liccionenoreply@blogger.com