The Next Step, March 2010

Health Care Reform Law to Benefit Children with Cancer

Childhood cancer survivors will now have access to health insurance coverage regardless of when they were treated for their disease or how costly their care may become. Insurance companies will no longer be able to deny health care coverage for children with cancer because of their pre-existing conditions, according to recent legislation that constitutes the biggest expansion of federal health guarantees in more than four decades.

The measure prohibits insurance companies from dropping subscribers’ coverage when they get sick. It bars insurance plans from imposing lifetime caps on coverage, a key issue for families whose children need complex medical and surgical procedures to treat their cancer and its complications. Up until now, patients and survivors have faced major health insurance denials, gaps and challenges for medical and other health services needed to manage their routine health needs and long term and late effects of treatment.
Of vital importance to many young adult survivors of childhood cancer is a provision in the new law that allows dependent adults up to age 26 to remain on their parents’ health insurance. This feature closes a gap in coverage for young adult survivors who often find it difficult to obtain insurance coverage once they leave college and are unemployed. In recent years, a few states extended the age of dependent care coverage in an effort to help young adults struggling to obtain insurance on their own. The new health care law creates a uniform national remedy for this coverage gap.

Last year, the Children’s Cause for Cancer Advocacy (CCCA) developed principles for health care reform for childhood cancer patients and survivors, which were sent to key congressional leadership as they worked to finalize the House and Senate health reform proposals. CCCA is continuing to work with policymakers to ensure that implementation of the new health reform law will meet the needs of childhood cancer patients, survivors, and their families. Many provisions of the law will take some time to implement but elimination of insurance denials or retroactive cancellations based on pre-existing conditions will go into effect soon.

St. Jude Developing Drugs to Target Specific Childhood Cancer

Researchers at St. Jude Children’s Research Hospital have been working on a new compound they hope will lead to a new drug to treat retinoblastoma, a rare childhood cancer of the eye. This would be the first new agent designed specifically for a childhood tumor, according to St. Jude scientists.

For economic and safety reasons, among others, drugs used to treat childhood cancer are first developed to treat cancer in adults and then brought into the clinic to treat children (so called “hand me down drugs”). ST. JUDE’s efforts represent a pioneering step toward a time when drugs may be designed for specific types of childhood cancers. The hope is that such drugs will be more effective and have fewer long term side effects than current therapies marketed for adults.

St. Jude researchers have found that a protein called MDMX, when produced in excess, is a hallmark of retinoblastoma. There are about 300 new cases of retinoblastoma in the U.S. each year. The compound found by St. Jude, called SJ-172550, is the first small-molecule inhibitor to target the MDMX. This target protein is also found in certain cases of breast, lung, prostate and other cancers, suggesting that there may be a larger market for a new drug that could target this defect. An overabundance of MDMX or a related protein, MDM2, can promote tumor growth by suppressing p53, another protein that causes cells stop from dividing uncontrollably.

Researchers estimate that it took about three and a half years from the discovery about MDMX amplification to characterizing the new St. Jude compound, SJ-172550, that inhibits MDMX over production. Several years of detailed chemical studies and additional work are likely needed before SJ-172550 might be ready for human trials, according to Michael Dyer, PhD, the paper's senior author.

The new discovery is reported in the April edition of the Journal of Biological Chemistry. St. Jude is the only National Cancer Institute-designated Comprehensive Cancer Center dedicated entirely to children.

Tobacco Products Scientific Advisory Committee Hosts Inaugural Meeting

The Food and Drug Administration (FDA) Tobacco Science Advisory Board met recently to review and make recommendations on the safety, dependence, and health issues relating to tobacco products to the FDA Commissioner. The Tobacco Products Scientific Advisory Committee was established after the Family Smoking Prevention and Tobacco Control Act was signed into law in 2009.

The Children’s Cause for Cancer Advocacy (CCCA) joined national, state and local organizations that endorsed the Family Smoking Prevention and Tobacco Control Act as a critical measure to help prevent young Americans and survivors of childhood cancer avoid a deadly, life-long addiction to tobacco use. Smoking and other health compromising behaviors are particularly harmful for survivors of childhood cancer, increasing the chances of the growth of new cancers and of additional damage to heart and lungs. More than 1,000 children become regular, daily smokers, and one third of them will ultimately die from their addiction. Tobacco-caused diseases remain the leading cause of preventable death in the U.S., killing more than 400,000 Americans each year.

The impact of the use of menthol in cigarettes on the public health, including such use among children, African Americans, Hispanics and other racial and ethnic minorities will one of several key topics for Committee study. The nature and impact of dissolvable tobacco products on the public health, including such use in children, will also be examined.

The new law will allow FDA to set product standards and ban some chemicals in tobacco products, but not completely ban addictive nicotine. Tobacco advertising and promotion, especially to children will be restricted. Penalties for sales of tobacco to under-age buyers will also increase.

Rise to Action Houston Set for April 10

The Children's Cause for Cancer Advocacy (CCCA) will hold a conference for survivors of childhood cancer in partnership with the MD Anderson Cancer Center and the Houston chapter of the Leukemia & Lymphoma Society in Houston, Texas on Saturday, April 10th.

Rise to Action (RTA) –Houston is designed specifically for survivors of all cancers who are in their teens, twenties, and thirties. The April 10th event will be held at MD Anderson's South Campus Research Building from 8:30am - 4:30pm. The conference is free for survivors and their families.

The conference will gather expert speakers on cancers’ late effects, health insurance, intimacy, alternative medicine. The conference will feature a presentation on the Passport for Care, an exciting new comprehensive online tool for survivors to manage their own care. The Passport for Care is being piloted at childhood cancer treatment centers throughout the state of Texas as well as in key Children’s Oncology Group sites. Ample breakout sessions and networking opportunities will be available for conference attendees. Local Houston organizations will be on hand to answer questions and share their resources.

Rise To Action conferences are CCCA's successful flagship survivor program and have been held in New York City, Washington DC, and Los Angeles over the past several years. RTA helps survivors learn how to manage their follow-up care and deal with issues unique to them. It also to engage survivors as advocates - for themselves and other survivors - to raise awareness and action around shared interests and challenges faced by their growing community.

For more information on the conference and for a copy of the agenda, please visit www.childrenscause.org/node/164. To register, email Jess Reamy at jreamy@childrenscause.org with your name and the names of any guests you will be bringing along. Space is still available but limited so please register soon.

CCCA to Host 3nd Annual Survivors’ Lobby Day

CCCA is hosting its 3rd Annual lobby day for survivors of childhood cancer on Thursday, April 22. The day will start with a morning of advocacy training followed by visits with Congressional staff on Capitol Hill in the afternoon.

Last year, over 60 survivors and family members brought the reality of childhood cancer survivorship to their members of Congress. Within days and weeks of their advocacy efforts, additional Members of Congress signed on as co-sponsors of the Childhood Cancer Survivorship Act (HR 2109), which proposed new programs for research and care. This year, survivors will once again advocate for improvements in care and increases in research funding for childhood cancer patients, survivors and their families.

The morning training will be held at the American Psychological Association, located at 750 First Street, NE, Washington, DC. Space is still available for those interested in attending Lobby Day. Sign up and strengthen the voices about childhood cancer on Capitol Hill by emailing Rebecca Gurvich at rgurvich@childrenscause.org. with your name and e-mail address by April 7.

CCCA Hosts Lobby Day Kick-Off Congressional Reception

The Children’s Cause for Cancer Advocacy (CCCA) will gather childhood cancer patients and survivors, advocates, policymakers and friends on Capitol Hill for the Survivors' Lobby Day Kick-Off Reception on Wednesday, April 21 from 5:00 to 7:00 PM. at the Rayburn House Office Building, Room B354. Guests will have an opportunity to hear about key legislative and regulatory priorities important for patients and survivors in the remainder of the 111th Congress and beyond. CCCA will recognize policymakers for their diligent work on behalf of the childhood cancer community. In addition to congressional staff, Members of Congress and guests, young survivors participating in Lobby Day will attend. To RSVP or for more information please contact Rebecca Gurvich at Rgurvich@childrenscause.org. Please RSVP by April 14, 2010.