Fp_Guy

Hi, Person with a Disability here.

For the Disabled Community nursing homes are the nightmare many of us fear. Not only because of loss of freedom, but neglect as well. We have been pushing states to adopt Medicaid funded consumer direct home care as a solution to stay in our communities. Do you see a growing demand for these types of programs among the elderly population?

Two questions:

What can be done to reduce overall costs of healthcare? I have Spinal Muscular Atrophy type II and am hoping to start Spinraza, the only drug ever approved to treat SMA. It however costs $125,000 per dose (6 doses in the first year then 3 per year ongoing). The insurance industry is already putting strings on who can get it (pay for performance, genetic requirements, type limitations).

What can be done to simplify the Medicaid Waiver system so people with disabilities are forced into nursing homes because of waiting lists to receive care at home. The Community First Choice part of the ACA was a good start but only 8 states have adopted it.

Fellow SMAbro here, boned yet?

Also keep fighting for Spinraza, there is absolutely no reason for delays at the hospital level now. We know it works, we know at least 5 different ways to get it into a complicated spine (insist they start with CT guidance!). So the only excuse is they don't know how to do the pre authorization, if that's the case call biogen, they'll walk the hospital through the entire process and in some cases give the hospital resources to do it. Do not accept their bullshit.

Hey Tim,

In terms of personal safety, how does this rank with other conflicts you've covered?