2012 Archived Advocacy News

Cutaneous Lymphoma Foundation Participates in Rare Disease Day

On February 29, 2012, the National Institutes of Health (NIH) celebrated the fifth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; the National Organization for Rare Disorders; and the Genetic Alliance.

David Lamb, cutaneous lymphoma patient and Cutaneous Lymphoma Foundation board member, and Susan Thornton, cutaneous lymphoma patient and the Foundation’s Management Consultant for Programs and Services, attended this important event to increase awareness of cutaneous lymphoma, how the disease impacts patients, and advocate for increased rare disease research efforts.

“Attending this event was truly inspiring.  As a patient with a rare disease, I was in awe of all that is being done to make progress on behalf of patients,” commented Mr. Lamb.

A few highlights from the meeting:

  • There are approximately 7,000 rare diseases worldwide – but there are treatments for only 250 of them.
  • The number of rare diseases is increasing because medical advances have enabled physicians and scientists to properly identify and classify them.
  • Eleven percent of NIH’s budget -- $3.5 billion – is devoted to rare diseases.  NIH’s Office of Rare Disease Research oversees 9,400 projects.
  • Rare Disease Day was observed in 60 countries.
  • One rare disease highlighted has only seven known patients, which should help make cutaneous lymphoma patients feel a bit less lonely.

The Foundation looks forward to continued collaborations with the NIH and other organizations advocating on behalf of patients with rare diseases.  Together, we will make sure that each person with cutaneous lymphoma gets the best care possible.

Regulatory Education and Action for Patients (REAP) - Comments on Proposed EHB Rule

The REAP collaborative work group has developed a document in response to the proposed rule entitled "Patient Protection and Affordable Care Act; Standard Related to Essential Health Benefits, Actuarial Value and Accreditation" to be distributed to state and federal stakeholders responsible for determining essential health benefit policies. The completed letter provides a collective patient voice outlining nine principles in four general areas (transparency, clarity, access and evolution) that REAP believes the Essential Health Benefits must address in order to meet patient needs. To download a copy of the letter, click here.

To read the proposed rules that the letter addresses visit the links below:

Essential Health Benefits:

Health Insurance Market:

Wellness Program:

Join the Cutaneous Lymphoma Foundation in Supporting Accelerated Drug Approvals Through TREAT and FAST

Proposed legislation has been introduced recently in the Senate and House of Representatives to modernize and expand the Accelerated Approval pathway of the Food and Drug Administration (FDA). The bills are Transforming the Regulatory Environment to Accelerate Access to Treatments (TREAT) in the Senate and Faster Access to Specialized Treatments (FAST) in the House.

The Cutaneous Lymphoma Foundation believes that TREAT and FAST would speed the development of treatments for rare diseases such as cutaneous lymphoma while still maintaining standards for safety and efficacy.  

To learn more, click here to access the National Organization for Rare Disorders' policy statement on TREAT and FAST.

Click here for a pre-drafted letter to send to your Senators.

Click here for a pre-drafted letter to send to your House representatives.

Click here to access a “Find Your Legislator” resource on our website with links to the legislators’ online contact forms, providing you an easy way to copy/paste your letters into their forms and send it right away.

Act Now:  Urge Your Senators To Support Increased Funding For NIH

Your immediate help is needed to secure support for medical research funding! Sens. Bob Casey (D-PA) and Richard Burr (R-NC) are circulating a “Dear Colleague” letter seeking a sustained, strong commitment to funding the National Institutes of Health (NIH), the nation’s largest funder of cancer research, in FY 2013.

Your help is needed now! The deadline for senators to sign the letter in support of maintaining a commitment to fund the NIH is Monday, March 26, 2012 and many members will not sign these types of letters unless asked to by their constituents.

Click here for a pre-drafted letter urging your senators to sign the Casey/Burr “Dear Colleague” letter today.  

Click here to access a “Find Your Legislator” resource on our website with links to the legislators’ online contact forms, providing you an easy way to copy/paste the letter into that form and send it right away.

NIH Establishes National Center for Advancing Translational Sciences 

In a move to re-engineer the process of translating scientific discoveries into new drugs, diagnostics, and devices, the National Institutes of Health has established the National Center for Advancing Translational Sciences (NCATS). The action was made possible by Congress’ approval of a fiscal year 2012 spending bill and the president’s signing of the bill, which includes the establishment of NCATS with a budget of $575 million.

NCATS will serve as the nation’s hub for catalyzing innovations in translational science. Working closely with partners in the regulatory, academic, nonprofit, and private sectors, NCATS will strive to identify and overcome hurdles that slow the development of effective treatments and cures.

To learn more about the impetus and development of NCATS, go to:

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