The Next Step, May 2010

Report on Outcomes for Children with Cancer Portends Challenges that Lie Ahead

A new report published in the April online edition of the Journal of Clinical Oncology provides a comprehensive overview of childhood cancer statistics from 1975 to 2006, and suggests a path forward to build on positive trends in treatment and to address shortfalls in progress. One of the authors, Dr. Malcolm A. Smith, previewed the report, titled Outcomes for Children and Adolescents with Cancer: Challenges for the Twenty-First Century,(LINK) at CCCA’s congressional reception on April 21.

The authors succinctly presents the recent history of the disease and the current state of research to provide a clearer sense of what the next steps need to be. Overall, the data show an increase in childhood cancer incidence from 1975 to 2006 of .6 percent, while mortality rates declined by 50 percent over the same time period. An increased incidence of acute lymphoblastic leukemia is most notable; however, the time period also saw a 64 percent reduction in the leukemia mortality rate. Large declines in mortality rates for gonadal cancer (85%), Non Hodgkin’s and Hodgkin’s lymphoma (75%); and neuroblastoma and bone cancer (35-40%) are encouraging, but the progress is less dramatic for solid tumors. The analysis suggests that more effective treatments during this era prevented an estimated 38,000 childhood cancer deaths.

Further examination of specific cancers, survival rates, and the treatments that saved these children reveals where progress has been slow and points further to challenges to future successful therapies. Specifically, the small population of patients with childhood cancer generally, and some pediatric cancers in particular, limit the number of phase III clinical trials that can be conducted to test new therapies. Further, the report cautions that the current therapeutic strategy of intensifying conventional chemotherapy is reaching its limits, while targeted therapies are just starting to emerge. The next steps in therapy development should be derived from greater understanding of the cellular pathways that govern tumor growth – a strategy that is showing great promise in the development of treatments for some pediatric cancers. A molecularly targeted approach to new therapies holds the dual promise of more effective and safer treatments. This modern approach to treatment of childhood cancer hopefully will be maximally effective and at the same time will eliminate the detrimental short and long health effects caused by high doses of chemotherapy.

As projects emerge to accelerate gene sequencing and the identification of DNA mutations and gene expression profiles, which are critical to the advancement of molecularly targeted agents, the patient populations on which these agents can be tested will shrink further based on the biology of their specific cancers. To harness the promise of this science for our children, policies are needed to provide incentives and financial support for therapeutic discovery that affects small numbers of patient. Collaboration among major pediatric institutions and clinical trial groups nationally and internationally will be necessary as will be innovative clinical trial design. These are policies that CCCA’s advocacy work will continue to advance.

Implementing Health Care Reform – Interim Regulations Issued for Dependent Coverage to Age 26

The Patient Protection and Affordable Care Act, signed into law on March 23, 2010, includes a number of insurance reforms that have a direct impact on childhood cancer survivors. These reforms are among the first provisions of the new health care law to take effect. On May 13, 2010, the Obama Administration issued interim final regulations to implement the requirement that insurers, in both the group and individual markets, provide coverage to the dependents of insured individuals up to age 26 – a key issue for young adult cancer survivors, and one that CCCA supported during the reform debate.

Under the new law, any plan or insurance issuer who provides dependent coverage of children based on their relationship to their insured parent must make coverage available until the child reaches 26 years of age. Currently, many plans that cover children do so based on whether they qualify as dependents for tax purposes; therefore limits on coverage are imposed based on issues of age, where the child resides, whether he or she is a student, and the level of financial support provided by parents. These considerations are no longer appropriate under the new law. The regulations clarify that in determining eligibility for coverage of a dependent under age 26, only the relationship between the child and participant in the plan is relevant. Further, the terms of dependent coverage may not vary by age. For example, minors may not be treated differently than adult children. In addition, eligibility may not be based on whether the child is married, although the coverage requirement does not extend to a child’s spouse.

Not only does the regulation, by virtue of its broad definitions, seek to ensure that as many children as possible can access coverage through their parents’ plans, but it also requires plans to provide adequate notice so that eligible children are aware of their opportunity to sign up and are not discriminated against in the process. Plans will be required to provide notice of the opportunity to enroll for at least 30 days (which must be provided not later than the first day of the first plan year on or after September 30, 2010). The benefits provided to a child must be the same as the benefit packages available to other covered children who did not lose coverage by virtue of a change in their dependent status. Plans must allow parents - who are not enrolled but otherwise eligible - the opportunity to sign up for coverage so that a qualified child can get the benefit. Parents also will be allowed to switch benefit package options so that the child has access to any benefit package option for which he or she would be eligible.

The extension of this coverage is not required until September 23, 2010. While many insurance plans have agreed to voluntarily continue coverage for young adults who would otherwise “age out” of their parents’ insurance before the implementation September deadline, a survey of employers indicates that many businesses do not have plans to provide this coverage in advance of the deadline. Further, some plans are “grandfathered,” allowing them to exclude an adult child under age 26 from coverage (prior to January 1, 2014) only if the child is eligible to enroll in an employer-sponsored health plan, not including the other parent’s plan. Regulations will be issued for grandfathered plans in the near future.

Implementing Health Care Reform – New High Risk Pools Provide Option for Uninsured

Another CCCA-endorsed provision in health care reform that is critical for childhood cancer survivors is the elimination of pre-existing condition exclusions. For uninsured individuals with pre-existing conditions, the Patient Protection and Affordable Care Act provides a temporary option for securing insurance coverage through newly created high-risk pools. These pools will be in place by the end of June and will provide benefits until January 1, 2014, when the health care insurance exchanges become operational.

The new law requires the Department of Health and Human Services (HHS) to create a high-risk pool within 90 days of the bill’s signing – or by June 21. States have the option of providing a high-risk pool or they may opt out and let their residents utilize the federal option. States that choose to participate will be eligible for a portion of the $5 billion in federal funds allocated to the program.

The means by which states create their high-risk pools will vary, but the benefits offered must cover at least 65 percent of a patient’s total allowed costs, and there will be an out-of-pocket limit of $5950 for an individual. Premiums will be set at a “standard rate” in line with average premiums charged by private plans for similar coverage, with an age-rate variation no more than 400 percent. The eligibility of those who enroll also is determined by federal statute. Eligible individuals must be citizens or lawful residents of the U.S., be uninsured for six months prior to applying, and have a pre-existing condition as defined by HHS. The issuance of Federal regulations on high-risk pools is expected in early June.

Several concerns about the high-risk pools have already surfaced, including whether the $5 billion that the bill provides is enough to fund the pools for three and a half years. Some question the requirement that individuals be uninsured for six months in order to access benefits through the new pools and are concerned about the disparity of treatment among those currently participating in existing high-risk pools compared to individuals who qualify for the newly created pools (e.g. premium inequity). Further, those who are relegated to a federally administered pool versus a state-run option may face more bureaucracy and access issues. In its efforts to maximize insurance protections for childhood cancer survivors, CCCA will continue to monitor and influence the issues around access to health care for individuals with pre-existing conditions as health care reform is implemented.

Survivors Gather at CCCA’s Rise to Action, Houston

CCCA brought Rise to Action (RTA), its flagship survivorship program, to Houston for the first time on April 10. Approximately 70 young adult survivors, family members, and local cancer experts came together at MD Anderson to celebrate survivorship, share knowledge, and learn how to be better advocates for themselves and other childhood cancer survivors.

RTA-Houston was presented in partnership with the MD Anderson Cancer Center and the Houston chapter of the Leukemia & Lymphoma Society. Designed specifically for survivors in their teens, twenties, and thirties, the conference coincided with this year’s National Young Adult Cancer Awareness Week.

The free, all-day conference included plenary sessions and breakout groups on topics ranging from late effects and follow-up care to intimacy, nutrition, education, employment, fertility, advocacy, and more.

A panel on health insurance and legal protections was particularly interesting to attendees, in light of the recent passage of health care reform legislation. One survivor said, “There are possibilities that I never knew existed, such as negotiation with insurance companies,” while others remarked that they feel more empowered from knowing their rights and what questions to ask about their health insurance.

Another highlight of the day was a presentation on Passport for Care, a new tool developed at Baylor College of Medicine’s Texas Children’s Cancer Center, designed to help childhood and young adult survivors manage their medical records online and give them ready access to resources. The Passport for Care is being piloted at childhood cancer treatment centers throughout the state of Texas, in addition to key Children’s Oncology Group sites nationwide.

RTA conferences have previously been held in New York City, Washington, DC, and Los Angeles, with the goal of helping survivors learn to deal with issues unique to them. It also engages survivors as advocates, to raise awareness and action around shared interests and challenges faced by their growing community.
“Please continue to open the door to young adults with cancer with conferences and support groups,” one attendee told CCCA. “Young adults need this. I know I do!”

CCCA thanks the following sponsors for their generous support of RTA in 2010: Pfizer, Genzyme, and Novartis.

Advocates Advance Agenda on Capitol Hill during CCCA’s Lobby Day

CCCA hosted its 3rd Annual Survivors’ Lobby Day on April 22, 2010. Fifty-five childhood cancer survivors and family members gathered in Washington, DC to advocate for the needs of patients, survivors and families of children with cancer. After a morning of advocacy training, survivors, parents, CCCA Staff, and volunteers participated in 23 congressional meetings on Capitol Hill. Advocates spoke to Members of Congress and congressional staff about their personal experiences and challenges as childhood cancer survivors, the importance of co-sponsoring the Childhood Cancer Survivorship Research and Quality of Life Act of 2009 (HR 2109), and the need for increased funding for the National Institutes of Health to advance pediatric cancer research.

The impact of the personal stories and experiences from the survivors and parents had a profound impact on the representatives and congressional staff. Since CCCA’s Lobby Day, at least seven more Members of Congress have agreed to add their names as cosponsors of the Childhood Cancer Survivorship Research and Quality of Life Act, increasing the number of congressional supporters to 47.

CCCA is grateful to Eli Lilly for its support of the Lobby Day program.

CCCA Hosts Survivors’ Lobby Day Kick-off and Congressional Awards Reception

To kick off the Survivors’ Lobby Day, CCCA hosted a congressional reception in the Rayburn Building on Capitol Hill. This event was designed to bring together the cancer survivors and family members who would participate in CCCA’s Lobby Day the following day with legislative staffers and friends of CCCA. Special guests included U.S. Representatives Jackie Speier (CA-12), Eleanor Holmes Norton (DC), Jim Moran (VA-8) and Dr. Malcolm Smith of the National Cancer Institute. Representatives Speier, Norton and Joe Sestak (PA-7) were honored with CCCA’s Congressional Champion Award for their service and commitment to the childhood cancer community. Special thanks to event sponsors, BB&T and Biotechnology Industry Organization, for making the event possible.

Rise to the Occasion in New York -- CCCA Fundraiser Set for November 11

Please Save the Date of Thursday, November 11th for CCCA’s annual “Rise to the Occasion” event in New York City. The event will start with a Networking Hour, followed by a Cocktail and Silent Auction Reception. This year’s event will be held at a new location, the lovely Ana Tzarev Gallery, located at 24 West 57 Street in New York City. Please contact Rebecca Gurvich at rgurvich@childrenscause,org for additional information.