Friday, July 15, 2016

Disappointing - A commentary on those representing our needs

I don't normally make my political feelings known, but I become frustrated when the people who can make a difference in our lives don't.

These people have their own retirement and healthcare programs. They are 'entitled' to these benefits because they 'represent' and supposedly 'serve' their constituents.

It still boggles my mind that these same people decide our future needs and benefits in Medicare programs and Social Security. I have felt for a long time that if any of them had to view their world from out perspective, they would be more responsive.

I don't believe 'they' understand what the 1-in-10 Americans mentioned below go through every day. The 10% doesn't include the families of those living with a rare disease who sacrifice so much to support and care for us.

I would like to see these representatives walk (or roll for those living in a wheelchair) a mile in our shoes before deciding what is important to vote on.  ENOUGH SAID!

Jul. 14, 2016

TOPIC: Advocacy

NORD Issues Statement as Senate Postpones Vote on Cures Legislation

Posted by Jennifer Huron
The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), as the Senate announced it would not vote on its Cures legislation, also known as the Senate Innovations for Healthier Americans Initiative, until September at the very earliest.
“On behalf of the 1 in 10 Americans with rare diseases, most of whom are still waiting for a treatment or cure, we are disappointed that Senate Cures was not able to pass at this point.  We will keep pushing for this legislation through the summer recess and into September to ensure the voices of patients and families are heard.
Many people with rare diseases are in a race against time.  There are 7,000 rare diseases and 95 percent of these have no treatment.  This public health issue encompasses cancer—approximately half of people with cancer are battling a rare cancer—and neurological, metabolic, digestive, blood and other disorders that are present across the medical spectrum.  
This vital package includes billions of dollars to spur medical innovation that would help the rare disease community, including new funding for critical research at the National Institutes of Health (NIH) and to accelerate drug approval at the Food & Drug Administration (FDA), and other provisions such as the OPEN ACT and Vice President Biden’s Cancer Moonshot, with the potential to stop rare diseases from altering and ending the lives of too many Americans far too soon. Most pressing is the reauthorization of the Rare Pediatric Disease Priority Review Voucher program currently set to expire at the end of September.”
Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)

1 comment:

  1. We need to keep the pressure on. There is background... short story: The House passed its own version on July 10, 2016, the administration wanted to add its own wish list of items to support other healthcare related stuff, and it didn't make it to the floor in the senate which says it will take may take it up later in the year. We need to take the "p" out of politics - by which I mean remove Partisan from politics; and return it to "p" standing for "for the People."

    The House version H.R.6, the 21st Century Cures Act passed with strong bipartisan support, with 230 bipartisan cosponsors, the bill passed comfortably by a roll call vote of 344-77. Seven Democrats joined 70 Republicans in voting against the bill, ... which has provisions for collaborative research, streamline clinical trials, providing for interoperability of healthcare IT systems, and amending the Physician Payments Sunshine Act so that medical textbooks, peer-reviewed journals, journal reprints and journal supplements become exempt. The bill previously experienced delays due to disagreements regarding on funding ... " for the National Institutes of Health (NIH) $10 billion was reduced to $8.75 billion during debate about offsets. Many Cures supporters would like to see this funding restored should the bill reach conference committee negotiations with the Senate. 21st Century Cures’ NIH funding is classified as mandatory funding instead of discretionary funding, meaning that the funds will not be subject to spending caps and will not be revisited each year during the appropriations process. $7 billion in offsets comes from selling oil from the Strategic Petroleum Reserve, while limiting Medicaid payments for durable medical equipment to Medicare rates will save an additional $2.5 billion...(t)he legislation received backing from the White House, which expressed support for provisions advancing the president’s precision medicine initiative as well as measures dealing with electronic health records (EHRs) and improvements to the clinical trial process. The White House also praised policies to incorporate the patient perspective into the drug development process and the development of biomarkers.

    The administration outlined concerns regarding the wisdom of providing the NIH with additional funding without considering the preexisting budgetary implications of sequestration. The White House’s statement went on to question whether the FDA will have the necessary resources to successfully execute the new responsibilities contained in 21st Century Cures while maintaining current performance levels. Finally, the administration expressed concerns about the impact of patent exclusivity exemptions on drug costs, and whether policies to bring drugs to market faster will negatively impact regulatory standards.

    The Senate earlier held its own series of hearings on medical innovation through its Innovations for Healthier Americans initiative, but legislative language is not finalized." Source:


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