The Next Step, August 2010

Health Care Reform Implementation – CCCA Weighs In On Dependent Coverage Regulations

The Patient Protection and Affordable Care Act (PPACA) requires health plans to offer coverage to insured’s dependents up to age 26, beginning on September 23, 2010, or when the policy renews. This provision of the new health care reform law offers childhood cancer survivors a new option for securing quality health benefits. The interim final rules to implement this provision were published in the Federal Register on May 13, 2010 (see The Next Step Online, May 2010 Edition) and offered the opportunity for stakeholders to submit comments on the regulations by August 11, 2010.

CCCA provided the perspective of childhood cancer survivors in a letter to the Office of Consumer Information and Oversight. CCCA’s letter highlighted the value of the dependent coverage provision to young adults who are cancer survivors and encouraged rational, straightforward implementation of the provision to ensure that as many young adults as possible have the opportunity to improve their coverage. While the regulations are well drafted in many respects, one suggestion CCCA offered is for the Administration to ensure that adequate notice is provided when benefits are set to terminate at age 26 so that individuals have time to research their options and transition to an appropriate plan.

Health Care Reform Implementation --- CCCA joins the Cancer Leadership Council to Improve Regulation of Grandfathered Plans

Regulations to govern the health plans that have “grandfather status” under the new health care reform law (PPACA) were published as interim final rules on June 17, 2010, and the Administration requested that comments on the regulations be submitted by August 16, 2010. The Cancer Leadership Council (CLC), of which CCCA is a member, sent a letter with comments endorsed by several other member organizations to advocate for the needs of cancer patients who are covered by grandfathered plans.

In an effort to allow patients to keep the coverage they have despite the new options and rules proposed by health care reform, PPACA “grandfathers” plans already in existence when the law was enacted and exempts them from many of the new requirements of health care reform. The CLC letter addresses several issues, including what changes in benefits will trigger a plan’s loss of grandfather status and how those changes affect cancer patients, such as children, who rely on a multidisciplinary approach to care. The letter also suggests that changes to a plan’s drug formulary and provider networks which would affect access to and continuity of care should affect grandfathered status -- issues not addressed by the Administration’s published rules.

Under the new law, health plans will be required, in 2014, to cover the cost of routine care provided in a clinical trial, an important treatment option for cancer patients. CCCA has long advocated for insurance coverage of the costs of routine care for cancer patients participating in clinical trials. Encouraging grandfathered plans to provide this coverage and for consumers to have access to information comparing plan coverage of clinical trials is another suggestion offered by the CLC’s comments. Finally, consumer access to an adequate and appropriate explanation of regulations that apply to grandfathered plans is recommended by the letter’s signatories.

CCCA will continue to monitor and influence health care reform implementation and its effect on childhood cancer patients and survivors as the process continues to unfold.

September is Childhood Cancer Awareness Month – Pediatric Cancer Caucus Plans Summit on Capitol Hill

In recognition of September as Childhood Cancer Awareness month, the House Pediatric Cancer Caucus, co-chaired by Representatives Joe Sestak (D-PA) and Michael McCaul (R-TX), is planning a summit to educate Members of Congress and staff on issues related to childhood cancer. The briefing will provide information on a variety of topics from research, to drug development, to survivorship. Panels of experts will be presenting the information, including Dr. Susan Weiner, CCCA’s President and Founder.

The Pediatric Cancer Caucus was formed in 2009 and serves as a clearinghouse of information and a forum on childhood cancer issues in the U.S. House of Representatives. Sixty-eight Members of Congress have joined the bipartisan caucus demonstrating a significant interest in these issues. The September summit is planned for Thursday the 16th.

Legislation to Encourage New Drugs for Rare Pediatric Diseases Introduced in U.S. Senate

Legislation to encourage the development of new therapies to treat rare pediatric diseases was introduced in the Senate by Senator Sam Brownback (R-KS) on August 4, 2010. The Creating Hope Act of 2010 (S. 3697) expands a provision of the Federal Food, Drug, and Cosmetic Act that currently offers an incentive for the successful development of drugs to treat tropical diseases in the form of expedited FDA review for another drug that the manufacturer wants to bring to market. By providing a “priority review voucher” to these manufacturers, approval time for a new drug may be shortened to 6 months rather than the 10 months that is standard for FDA’s review process. The Creating Hope Act would expand current law to provide priority review vouchers to pharmaceutical companies that develop innovative treatments for rare pediatric diseases, which are approved by the FDA.

A “rare pediatric disease” is one that affects less than 200,000 people and is recognized in the medical community as affecting a pediatric population. The new drugs developed to treat such diseases could qualify if the cost of development would exceed revenue and if that drug has not received FDA approval for use in adults. The voucher can be used to reduce approval time for another drug that the manufacturer is developing or it can be sold to a different company interested in speeding another drug to market. The voucher would hold the promise of several months of additional revenue generation. In an effort to enhance the value of the vouchers, the transferability would be unlimited under the legislation.

The bill was introduced with the support of Senators Sherrod Brown (D-OH) and Al Franken (D-MN), who are original co-sponsors. CCCA’s mission is to facilitate the development of safer, targeted, effective therapies for children with cancer, and CCCA supports policies that encourage development of therapies for small patient populations.

CCCA Updates Website with Virtual Survivor Conference Content and Testimonials

The CCCA website is introducing a new "virtual conference" portal dedicated to online survivorship materials. The information presented in the virtual conference section has been adapted from CCCA's live Rise to Action (RTA) conferences and is aimed at young adults in their teens, twenties, and thirties who have survived childhood cancer. In addition to educational information, helpful resources, and relevant news articles on a range of topics, the virtual conference also includes slideshow videos with audio of many presentations given by leading oncologists and survivorship experts from around the country.

The new virtual conference features easy-to-navigate topics ranging from late effects such as fertility and depression to challenges posed by health insurance and employment. Interested survivors may participate at any time by visiting www.childrenscause.org/virtual-register. After submitting a simple registration form, participants will be taken to a list of topic areas to choose the virtual conference experience suited to their individual survivorship needs.

In addition, CCCA has added inspirational profiles of childhood cancer survivors to the website, located here. Read and share the stories of survivors like Heather, who was diagnosed with a brain tumor as a teenager and went on to win marathons in her twenties, or Sebastian, who was given a week to live when he was diagnosed with neuroblastoma at eight years old and today just finished his senior year at Tufts University.

Survivors looking for a way to help inspire patients and families facing a new diagnosis can submit their own stories through the website at www.childrenscause.org/story-submit.

CCCA thanks Pfizer for its generous support of the virtual RTA conference project.

Save the Dates: CCCA Events in Chicago and New York in the Fall

CCCA is actively planning its annual fundraising events in Chicago and New York. Please save the date of Thursday, September 23rd to join us at 437 Rush in downtown Chicago for what promises to be a lively event.

On Thursday, November 11, CCCA will hold its signature fundraiser in New York City at the lovely Ana Tzarev Gallery, located at 24 West 57 Street. In New York, CCCA will be joined by former Congresswoman Deborah Pryce (1993-2009) who established and chaired the House Cancer Caucus and founded Hope Street Kids Foundation, in memory of her daughter Caroline, to raise funds for pediatric cancer research. For more information, contact Rebecca Gurvich at rgurvich@childrenscause.org.