Childhood Cancer Research: We Must Do Better

Every summer about this time I play golf in a pediatric cancer research fundraiser where the parents, family, and friends of Jeffrey Pride raise money for pediatric cancer research. Jeff died of acute lymphoblastic leukemia (ALL) at age seven, and for the last 12 years The Jeffrey Pride Foundation for Pediatric Cancer Research has raised money for the pharmacological research of new chemotherapeutic agents and to subsidize clinical trials so that children will be able to receive new and potentially breakthrough therapies.

Like many charitable organizations that have sprung up after such a tragedy, The Jeffrey Pride Foundation is an all-volunteer, tax-exempt, Internal Revenue Code Sec. 501(c)(3) organization whose sole mission is to raise funds, 100 percent of which go directly to pediatric cancer research. In addition, because the foundation’s board wanted its funds to have the greatest impact, it chose, with the help of Jeff’s doctors, to contribute to the Children’s Oncology Group (COG), the world’s largest pediatric cancer research organization. And as one of the larger donors to COG, the foundation has a designated fund called The Jeffrey Pride Fund for Targeted Therapy Discovery in Childhood Acute Lymphoblastic Leukemia. COG, a National Cancer Institute (NCI) supported clinical trials group, oversees more than 90 percent of all pediatric cancer research done in North America, Australia, New Zealand, Sweden, and the Netherlands, and writes all treatment protocols for children’s chemotherapy regimens. According to the NCI, each year approximately 4,000 children who are diagnosed with cancer enroll in a COG-sponsored clinical trial.

Outlook for Survival

Despite the best efforts of the NCI, COG, private fundraising foundations, and clinical researchers, cancer is still the leading cause of disease-related death among children (ages 1-19) in the United States. In 2014, it is estimated that 15,780 children will be diagnosed with cancer and 1,960 will die of the disease. There is some good news, however. According to the NCI, survival rates have improved for some childhood cancers. For instance, in 1975, just over 50 percent of children diagnosed with cancer survived at least 5 years. However, by 2004-2010, more than 80 percent of children diagnosed with cancer survived at least 5 years.

Pediatric Regimens Needed 

Some evidence suggests that children may have better treatment outcomes if they are treated with pediatric treatment regimens rather than adult treatment regimens. For instance, it is possible that the improvement in the 5-year survival rates for 15- to 19-year-olds with ALL, from approximately 50 percent in the early 1990s to 78 percent in 2003-2007, reflects the greater use of pediatric treatment regimens. This evidence underscores the need for more pediatric cancer clinical trials and the development of pediatric treatment regimens. Unfortunately, this can only happen through greater funding from the government, private donations, and a greater commitment from drug manufacturers. In fiscal year 2012, the NCI’s funding of pediatric cancer research was only 208.1 million, which was approximately 3.5 percent of its $5.87 billion budget.

Long-Term Outlook and Follow-Up Care

While 5-year survivor rates are up for certain childhood cancers, surviving for 5-years is not a lifetime cure. In addition, childhood cancer survivors need follow up care and ongoing medical surveillance because of the risk of complications steming from their treatment. An analysis of childhood cancer survivors treated between 1970 and 1986 has shown that cancer survivors remain at risk for complications and premature death as they age, with more than half experiencing a severe complication or death by the age of 50.

In addition to regular medical follow-up examinations for childhood cancer survivors, the NCI underscores the importance of parents keeping an accurate record of cancer treatments, including: the type and stage of cancer; date of diagnosis and dates of any relapses; types and dates of imaging tests; contact information for the hospitals and doctors who provided treatment; names and total doses of all chemotherapy drugs used in treatment; the parts of the body that were treated with radiation and the total doses of radiation that were given; types and dates of all surgeries; any other cancer treatments received; any serious complications that occurred during treatment and how those complications were treated; and the date that cancer treatment was completed.

The NCI booklet Facing Forward: Life After Cancer Treatment contains a list of organizations that can help parents keep track of this information. The NCI also provides a handbook for parents of children with cancer.


Progress, Setbacks, Tragedy at International AIDS Conference

The 20th International AIDS Conference (AIDS 2014), held in Melbourne, Australia, from July 20-25, 2014, attracted 12,000 participants, including top researchers, AIDS activists, individuals living with HIV, and famous faces.


Human immunodeficiency virus (HIV) attacks the immune system, leaving individuals with the virus less able to fight off infections and diseases. Without medical treatment, HIV can lead to acquired immunodeficiency syndrome (AIDS). According to the Centers for Disease Control and Prevention (CDC), there were 1.1 million Americans living with AIDS in 2010; approximately 50,000 additional individuals are infected each year. The CDC estimates that 16 percent of individuals with HIV are not aware of their infection. The most effective treatment option to date is antiretroviral therapy (ART), a combination dosage of three or more antiretroviral (ARV) drugs.

Stopping the Spread

HIV is transmitted when certain bodily fluids, including blood, from an infected individual come into contact with a mucous membrane or bloodstream of another individual. The most common transmissions occur from sexual intercourse and sharing intravenous needles. Condoms and other barrier methods that prevent bodily fluid transmission help prevent HIV infection. More recently, a daily medication regimen called pre-exposure prophylaxis (PrEP) has been recommended for individuals at high risk for HIV infection, especially in combination with condom use. The World Health Organization (WHO) recently issued a statement, saying it “strongly recommends men who have sex with men consider taking” PrEP alongside the use of condoms.  AIDS experts estimate that HIV incidence among gay men globally could be reduced by 20 to 25 percent through PrEP, preventing up to 1 million new infections in this group over 10 years. One PrEP, Truvada®, was approved by the FDA in 2012; however, only approximately 4,000 Americans have received prescriptions for the drug.

At AIDS 2014, research was presented showing that in a trial of 1,600 individuals, none who took Truvada at least four times per week became infected with HIV. Studies have also shown that circumcision helps prevent female-to-male HIV transmission by about 60 percent. Fears that circumcised men would use participate in riskier behaviors due to their belief that circumcision protected them were assuaged at AIDS 2014, where research was presented showing that circumcision has no effect on risky sexual behavior. In fact, the research found that some protective measures, such as condom use, increased after circumcision,  which would support a wider implementation of medical circumcision programs. Former President Clinton spoke at AIDS 2014 about the need for prevention and treatment of HIV. Clinton suggested that AIDS could be eradicated, saying “The AIDS-free world that so many of you have worked to build is just over the horizon. We just need to step up the pace. We are on a steady march to rid the world of AIDS.” Some experts agree: despite the lack of a cure, the effectiveness of treatment and prevention options could combine to stop the spread of HIV. If these drugs continue to be made available, each individual with HIV would pass the infection on to less than one person over the course of their lifetime, making the rate of new infections negligible.

Setbacks and Roadblocks

Despite the promise of treatment options, researchers and activists still face many obstacles in eradicating AIDS. The cost of ART and PrEP drugs is prohibitive for many individuals, and there is a lack of funding for research in many areas. Bob Geldof, the musician who founded the charity musical supergroup Band Aid and co-wrote Do They Know It’s Christmas?, said in an AIDS 2014 speech that the lack of funding is “disgraceful.” He said that poverty and AIDS are inextricably linked, and reminded conference attendees of the progress made fighting AIDS over the past 30 years. Recent hopes for a possible HIV cure were destroyed when the “Mississippi baby,” an infant born to an untreated HIV-positive mother, was shown to be infected with the virus. The baby had been given a strong dose of ART drugs at birth and for the following 18 months; then the Mississippi baby left treatment. When she emerged five months later, doctors found no trace of the virus—in general, HIV returns within one month of cessation of treatment. Unfortunately, 27 months after the Mississippi baby stopped treatment, the child tested positive for HIV. Similarly, a new study was published showing that two HIV patients who initially tested negative for HIV following bone marrow transplants now show recurrence of the virus. Prejudice against individuals with HIV, sex workers, and gay men also hinders efforts to stop the spread of the virus. A study released at AIDS 2014 showed that in countries where homosexuality is criminalized, HIV infections increased because gay men stopped seeking medical treatment. Another paper presented at the conference showed that the transmission of HIV among female sex workers would decrease by one-third if prostitution were legal around the world.


AIDS 2014 faced a devastating loss of at least six individuals who died in the Malaysia Airlines Flight 17 crash.on their way to the conference. The individuals are: Pim de Kuijer, lobbyist Aids Fonds/STOP AIDS NOW!; Joep Lange, co-director of the HIV Netherlands Australia Research Collaboration (HIV-NAT); Lucie van Mens, Director of Support at The Female Health Company; Martine de Schutter, Program Manager Aids Fonds/STOP AIDS NOW!; Glenn Thomas, World Health Organisation; and Jacqueline van Tongeren, Amsterdam Institute for Global Health and Development.

Coalition Demands an End to Public Health Budget Cuts

Recent budget cuts to the already-dwindling fund devoted to public health initiatives are resulting in “dire consequences” for many programs, health providers, and patients according to a new report issued by the Coalition for Health Funding (CHF). The report, entitled “Faces of Austerity: How Budget Cuts Hurt America’s Health,” emphasizes the lasting and widespread impacts that the past budget cuts catalyzed and includes a call on Congress to stop the cuts and, instead, to invest in public health more vigorously.

The demand to Congress to end budget cuts is grounded in the findings outlined in the CHF report. Specifically, the CHF highlights what it calls “deep cuts to public health programs in recent years” that “undermine our ability to prevent and respond to a variety of health emergencies, from outbreaks of measles, Chikungunya, and MERS, to the steady drumbeat of school shootings at the hands of mentally ill gunmen, to an epidemic of heroin abuse.” A CHF press release also argues that Congressional cuts affect programs on state and local levels as well, as it describes such cuts resulting in slashes to the hot meal program for a large portion of the clients at Athens Community Council on Aging in Athens, Georgia, and threatened heart and stroke research projects funded by the National Institutes of Medicine at the Virginia Commonwealth University. In addition to the termination of programs, the CHF also focuses on the impacts these cuts have on health employment, as “budget cuts have forced the layoffs of more than 50,000 public health professionals who monitor and respond to virus outbreaks, immunize children and the elderly, inspect restaurants, and care for the indigent.”

“Just a tiny fraction of the federal budget goes toward supporting all of our nation’s public health needs—everything from preventing disease to keeping our food and drugs safe, to ensuring that Americans have access to primary care doctors,” the president of the CHF, Emily Holubowich, stated as she explained the current funding situation, “That small pot of money has faced huge cuts in recent years, many triggered simply because Congress couldn’t find a permanent solution to sequestration.” Advocates associated with the CHF were reported to have recently visited the Capital to brief congressional staff members on the effects of the cuts outlined in the report and to ask Congress to reverse this trend. The CHF represents over 90 public health advocacy organizations and works to “preserve and strengthen public health investment in the best interest of all Americans.”

Cutting Costs: Medical Homes, Urgent Care Centers, or Both?

The New York Times recently published adjacent stories about two very different ways to cut health care spending. On one hand, health insurers and other payers are increasingly moving toward accountable care organizations (ACOs) and patient-centered medical homes (PCMH) to replace the former fee-for-service method of payment. Medicare and some Medicaid agencies are making similar choices. What these arrangements have in common is care coordination—capitated payments to the physician, practice, or organization, additional compensation for coordinating the care of patients with complex or chronic medical conditions, and incentive payments based upon cost savings and health outcomes.

Medical Homes and Value-Based Purchasing

The Blue Cross Blue Shield Association (BCBSA)  announced on July 9, 2014 that its member organizations participated in 350 locally-developed programs in 49 states, involving ACOs, PCMHs, value-based purchasing, and pay-for-performance arrangements. BCBSA reported that these programs saved it $500 million in 2012, while the member associations reported reductions in emergency room visits, especially “primary care-sensitive” visits, hospital admissions, and use of radiological imaging. At the same time, management of patients’ diabetes improved, and the use of preventive services, such as breast cancer screenings and pneumonia vaccinations, increased.

The story also profiled a physician who used the incentive payments he received for care coordination to provide preventive services. He even used them to offer Weight Watchers meetings at his office at a reduced cost.

Urgent Care Centers

In the same issue, the Times reported that investors are increasingly attracted to urgent care centers.  These facilities are walk-in clinics that cater to people with medical problems that are relatively simple and can be addressed quickly. They may offer evening and weekend hours.  People often use them instead of the emergency room to get treatment for minor injuries. Both the wait and the cost are significantly lower than a visit to the emergency room. Other patients may be attracted to UCCs because they can see a doctor when they want to rather than within typical business hours.

Urgent care centers (UCCs) may meet the needs of patients for whom an emergency department is not an appropriate care setting.

So can overworked, underfunded emergency departments refer their Medicaid patients with nonemergency conditions to UCCs? Not necessarily.

Unlike hospitals with emergency departments, UCCs  have no obligations under the Emergency Medical Treatment and Active Labor Act (EMTALA). They may refuse service to Medicaid beneficiaries, the uninsured, or anyone else who cannot pay the entire bill before they receive treatment.

Apparently, private equity firms see high profit potential from clinics that serve a high volume of patients with simple problem. The ability to cherry-pick patients gives these businesses an edge over the competition. Venture capital firms have invested $2.3 billion in UCCs since 2008.  Insurance companies and health systems also are investing in UCCs.

UCCs are inexpensive and convenient, but they’re not for everyone. According to the American Academy of Urgent Care Medicine (AAUCM), the UCC is not meant to replace the office of a primary care physician. They’re not looking to build long-term relationships with patients.The AAUCM encourages patients to use their members’ facilities when their primary physician is not available, and it emphasizes the UCC’s commitment to send records on to the primary care physician when the urgent problem has been addressed.

If a primary care physician’s office is a medical home,  perhaps the UCC could be considered the medical motel.