2013 Archived Advocacy News

National Patient Advocacy Foundation's Nancy Davenport-Ennis Commentary on Medicare Benefits and Cancer Care

June 5, 2013 - Nancy Davenport-Ennis' commentary on Congress' lack of action in providing improved medicare benefits for cancer care was published on the Roll Call website. Roll Call is a source for Capital Hill news. Nancy, a cancer survivor, is the Founder and CEO of the National Patient Advocacy Foundation (NPAF), a policy organization that seeks to improve patient's access to care. As a member of the NPAF, the Cutaneous Lymphoma Foundation is a part of this message to Capital Hill.

Click here to read Nancy's commentary.

NPAF Fall 2013 Policy Consortium Highlights

Two times a year, the National Patient Advocate Foundation (NPAF) convenes the Policy Consortium bringing together a diverse group of national health care thought leaders to discuss issues of importance to all health care stakeholders. This fall's discussion addressed "Price, Value and Access: A Discussion on Solutions to the Rising Costs of Health Care."

Susan Thornton, CLF's CEO, and Claudia Day, former CLF Board Member and patient advocate attended the meeting. Click here to read highlights from the Consortium.

Rare Disease Day 2013 - February 28, 2013

The Cutaneous Lymphoma Foundation will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day on February 28, 2013.  On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern.

A rare disease is one that affects fewer than 200,000 Americans.  There are nearly 7,000 such diseases affecting nearly 30 million Americans. On Rare Disease Day, people with rare diseases around the world promote awareness of the challenges of living with a rare disease.  The global theme for 2013 is “Rare Disorders Without Borders.” 

World Rare Disease Day was launched in Europe four years ago and last year was observed in more than 60 nations.  It is always observed on the last day of February.  On that day, patients and patient organizations will post stories, videos and blogs online and host events to raise awareness of these diseases, which are often called “orphans”.

This year, the observance has special significance in the U.S. because 1983 is also the 30th anniversary of the Orphan Drug Act, which provides incentives to encourage companies to develop treatments for rare diseases, and of NORD, which was established by patient advocates in 1983.

Rare Disease Day 2013 activities in the U.S. will include awareness events at several State Houses, a Rare Disease Research Hall of Fame, a Handprints Across America photo gallery, and an event at the National Institutes of Health (NIH) in Bethesda, MD. 

In 1983, the Orphan Drug Act was passed by Congress to create financial incentives for companies to develop treatments for rare diseases.  Since then, more than 400 orphan drugs and biologics have been approved by the Food and Drug Administration (FDA).  It is estimated that approximately 15 million Americans benefit from these products, but that still leaves millions more with diseases for which there is no approved treatment.

For more information about Rare Disease Day activities in the U.S., go to  For information about global activities, go to

Update from REAP Meeting - Politics and Policy in Health Care Reform

The semi-annual meeting of the Regulatory Education and Action for Patients consortium was held in Washington, DC on January 17, 2013.   The topics discussed focused on the current political landscape post-election and looking forward over the next two years along with the future of healthcare reform, improper payments in federal safety net programs (Medicare/Medicaid), an update on the patient focused drug development program in progress at the FDA and an update from the REAP workgroups.

Click here to read a recap of the January meeting highlights.

The REAP consortium currently has 53 member organizations across a wide variety of patient advocate groups, all coming together for a common cause - to promote the voice of patients to policy makers and regulators.  This consortium began in 2010 with a few organizations and authored one collaborative comment letter to lawmakers, was signed by 6 organizations.  By the end of 2012, the consortium had submitted 10 comment letters total, and the last comment letter was signed by 32 groups, including the CLF, who was also a member of the workgroup that developed the response.  The comment letter outlined several detailed recommendations for clarity and transparency surrounding the proposed rule published by the Department of Health and Human Services (HHS) that helps consumers shop for and compare non-grandfathered private health insurance options in the individual and small group markets by promoting consistency across plans and protecting consumers by ensuring that plans cover a core package of items and services.  Otherwise referred to as Essential Health Benefits.

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