Mary Caffrey

In recent years, headlines about life-saving treatments for cancer have come with a caveat: the cost of care is has soared. A 2015 Global Oncology Trend Report found that worldwide spending on cancer medications rose 10.3 percent in 2014 to pass the $100 billion mark.

The amounts patients and families are expected to shoulder are so high, and the resulting stress so great, that Duke University’s Yousuf Zafar, MD, MHS, coined the term “financial toxicity” to describe the poor quality of life and patterns of nonadherence that oncologists were seeing among patients.

Enter the Andrea Lynn Cancer Fund, an Illinois-based fundraising group that seeks to help families “financially and emotionally exhausted” from battling cancer. A five-member board works with the Centegra Sage Cancer Center in McHenry, Illinois, to identify patients who would be good candidates for assistance.

Testimonials tell how the fund stepped in after cancer, once beaten, returned elsewhere—prompting new rounds of chemotherapy or radiation for patients and families whose resources are already depleted.

The story of Gary Ford, who battled tumors and the cardiac effects of chemotherapy for 20 years is told by his wife, who writes, “Gary and I never wanted to be in this position. We would much rather be helping others than accepting help.”

The fund, which was founded in 2006, is named for Andrea Lynn, who died of colon cancer in 1993. Her children and friends created the not-for-profit fund and describe her this way: “Mothers are amazing. They give without expectations. They know not of exhaustion, but only the joys of love.”

Fund organizers say that Lynn’s death could not be “an excuse for lack of action; instead, we use it as a motivation."

“We realize we are not the only family that has struggled with this disease and all of the eroding effects it has on its victims,” they say.

The fund holds a series of community-oriented fundraisers throughout the year: a ride-and-rally motorcycle event in June, a 5K road race called the “Pumpkin Stampede” in October, and an ice fishing derby in February. It invites partners to suggest fundraising ideas, too.

For more information on the Andrea Lynn Cancer Fund, visit their 

1. Leonard K. Global cancer spending reaches $100B. 

http://www.usnews.com/news/blogs/data-mine/2015/05/05/global-cancer-spending-reaches-100b

. Published May 5, 2015. Accessed March 20, 2016.

2. Zafar SY, Abernethy AP. Financial toxicity, part I: a new name for a growing problem. 

Articles

Andrea Lynn Cancer Fund Wants to Ease Financial Toxicity for Patients

A visitor had arrived to write about the fund that bears her name, and 8-year-old Thea Danze was all over it.

“I have something else for you to do,” said Thea, who sought help drawing posters for an upcoming fundraiser — including her wish to bring an inflatable fire truck to the event.

After a few minutes with Thea, you’re convinced that if she puts her mind on getting that fire truck, nothing will stop her. So far, nothing has, which is amazing given the challenges she’s faced.

Thea has lived nearly all her life with a brain tumor, a low-grade (or slow-growing) glioma, which has required five different treatment protocols and multiple surgeries. At age 4 months, she had a massive stroke following surgery to remove half the tumor, causing motor deficits. Early chemotherapy regimens were so harsh she stopped eating regular food; to this day, Thea’s nutrition comes through a tube in her stomach. At age 5, the shunt that controls hydrocephalus malfunctioned, causing damage that required Thea to learn to walk again.

Today, however, there’s more hope than ever for Thea and the 4,600 children diagnosed with a brain tumor each year in the United States.

 Even before President Obama announced his precision medicine initiative, the push to collaborate and share data was taking hold in areas of cancer research that historically had produced few options.

“There’s so much progress being made,” said Thea’s mother, Trisha Danze, who with her husband, Jeff, created Thea’s Star of Hope in 2012 to raise funds for research on pediatric brain tumors.

For Thea, the course took a positive turn five years ago when she began taking Avastin (bevacizumab), which has controlled the tumor with fewer side effects. Thea takes half a normal dose every four weeks. Physicians at Children’s Hospital of Philadelphia (CHOP) monitor her kidney function, and if they see a problem, “We take a break,” Trisha said.

But Thea’s parents see a future with more treatment choices — and fewer side effects. Given all she’s been through, Trisha said, “We don’t know the side effects that might occur later in life.”

With more people living for decades after chemotherapy, there’s concern about long-term cardiac effects. In 2015, the American College of Cardiology held a half-day session on cardio-oncology to discuss this issue.

 The effects of Thea’s early treatments inspired Trisha and Jeff to do something to expand the roster beyond the three drugs approved for pediatric brain tumors.

If it seems unlikely that a small fund like Thea’s Star of Hope could make a difference in treating pediatric brain cancer, the Danzes have two things going for them.

First, they have good timing, as new clinical trial designs make it possible to explore treatments for rare cancers. “Basket studies” have shown that building a trial around a genetic mutation across multiple tumor types can drive treatments for patients across a spectrum of cancers, none of which would have enough patients to draw attention from the pharmaceutical industry.

And second, Trisha said, “We have Thea.”

“She’s quite a little speaker,” Trisha said, and “very involved” in the nonprofit, which makes direct donations for basic research and supports the Children’s Brain Tumor Tissue Consortium (CBTTC).

 This collaboration among several academic centers maintains a brain tumor tissue registry, so that researchers have access to the most up-to-date data and trial results.

In the case of low-grade glioma, Jeff said, the tumors are known to exhibit 

 mutations also seen in melanoma (several studies have been published since 2014).

 In recent years, FDA has approved a wave of immunotherapy treatments for melanoma (Yervoy, Opdivo, Keytruda). Jeff explained that with new therapies already on the market, a small trial involving pediatric patients could be done for about $300,000 — a fraction of the cost of bringing a new drug to market.

Thus, by pooling resources with other funds—and being strategic with their research choices&mdash;the Danzes and a 10-member board of directors have already made a difference. Thea’s Star of Hope contributed $20,000 toward an important study on the genetic triggers common in pediatric gliomas, which the Danzes learned about through CHOP. The study appeared in 

A collaboration among CHOP, the Perelman School of Medicine at Penn, and the Dana-Farber Cancer Institute, the study revealed a three-way mechanism in which a mutation drives the tumor development. Findings revealed by pooling data from 249 cases found that this “gene fusion” mutation caused traits designed to prevent abnormal cell development to prompt the opposite effect, fueling tumor growth.

The findings have important implications for diagnosis and treatment, because they will help physicians more accurately understand each diagnosis and avoid using the wrong chemotherapy, according to a statement from the researchers.

 The study’s lead author, Adam Resnick, PhD, director at the Center for Data Driven Discovery at CHOP, is a key player in Obama’s precision medicine initiative and took part in its recent summit.

Despite its small size, Thea’s Star of Hope can make an impact because it puts funding in areas like CBTTC, which gets no support from the National Institutes of Health. Volunteers and donors are not just supporting research; they are also support the cause of data sharing, which is rapidly overcoming resistance.

“It’s hitting a tipping point,” Trisha said. Those unwilling to share data now find themselves on the outside looking in, she said, while collaborators are the cool kids’ club.”

To learn more about Thea’s Star of Hope

1. Brain tumor statistics. American Brain Tumor Association website. 

http://www.abta.org/about-us/news/brain-tumor-statistics/

2. Okuosa TM, Barac A. Advancing patient-care in cardio-oncology: the ACC.15 Cardio-Oncology Intensive. 

. 2015;21(SP8):SP295-SP296. 3. Stallard J. Clinical trial shows promise of “basket studies” for cancer drugs. Memorial Sloan Kettering Cancer Center website. 

https://www.mskcc.org/blog/clinical-trial-shows-promise-basket-studies-drugs

. Published August 20, 2015. Accessed March 4, 2016.

4. Children’s Brain Tumor Tissue Consortium. 

5. Penman CL, Faulkner C, Lowis SP, Kurian KM. Current understanding of BRAF alterations in diagnosis, prognosis, and therapeutic targeting in pediatric low-grade gliomas. 

. 2015;5:54. doi: 10.3389/fonc.2015.00054.

Preusser M, Bienkowski M, Birner P. BRAF inhibitors in BRAF-V600 mutated primary neuroepithelial brain tumors. 

. 2016;25(1):7-14. doi: 10.1517/13543784.2016.1110143.

7. Bandopadhayay P, Ramkissoon LA, Jain P et al. MYB-QKI rearrangements in angiocentric glioma drive tumorgenicity through a tripartite mechanism. 

. 2016;48(3):273-282. doi: 10.1038/ng.3500.

8. Gene fusion” mutation uses three-way mechanism to drive childhood brain cancers [press release]. Philadelphia, PA: Healthcanal; February 27, 2016. 

http://www.healthcanal.com/cancers/70648-gene-fusion-mutation-uses-three-way-mechanism-to-drive-childhood-brain-cancers.html

9. CHOP Big Data center visits White House for precision medicine summit. Cornerstone blog. Children’s Hospital of Philadelphia website. 

http://blog.research.chop.edu/chop-big-data-center-visits-white-house-for-precision-medicine-summit/

. Published February 25, 2016. Accessed March 4, 2016.

An organization does not have to be huge to do great things. In fact, armed with a dedicated board and a spunky child, Thea's Star of Hope is helping make advancements in pediatric brain cancer.

Thea's Star of Hope: How Small Cancer Funds Can Make a Big Difference

 Perhaps it makes sense that the best formula for fighting cancer came not from scientists, or industry, or government, but from twin sisters.

Kathy Giusti and Karen Anderson share the same genome. Today, the approach they built from the ground up to take on multiple myeloma — which Kathy learned she had in 1995 &mdash; is the model for the Obama administration’s embrace of precision medicine and its “moonshot” against cancer.

Through the Multiple Myeloma Research Foundation (MMRF), the sisters created an ethos of breaking down barriers that separate academic researchers and industry. They seek collaboration to share genetic data and knowledge, to speed the march toward new therapies, and in time, cures.

“Our model has always been that way,” said Sharon Saias, vice president of marketing for MMRF, who said Giusti’s remaking of the research paradigm has not only changed the way the government thinks about cancer research, “but precision medicine across all diseases.”

MMRF is a leader in data collection, including the CoMMpass study, which seeks to examine the disease’s behavior over time. Patients donate tissue samples at diagnosis and whenever the disease changes for up to 10 years. Three years in, CoMMpass is bearing its earliest fruits, Saias said. Abstracts were presented at the American Society of Hematology (ASH) in December 2015.

“People are really starting to understand what CoMMpass can do,” Saias said. While tissue collection does place some burden on participants, “patients are seeing the value.”

Already, CoMMpass is showing the survival value of stem cell transplants, a treatment that Giusti was able to obtain thanks to her twin. CoMMpass promises to identify different disease characteristics between racial groups. But Saias said its greatest value will be to track how the many therapies now available perform in different patients; in turn, this will guide treatment decisions in the future, giving doctors insight into how to use different therapies in combination.

When Giusti was diagnosed more than 20 years ago, multiple myeloma hadn’t seen a new therapy in decades. MMRF has supported research for 10 different therapies that have received FDA approval since its founding in 1998.

Three new therapies were approved at the end of 2015: Darzalex (daratumumab), Empliciti (elotuzumab) and Ninlaro (ixazomib). The first two are monoclonal antibodies, representing a new class in the arsenal against MM, offering particularly good news for patients whose disease has relapsed or not responded to other treatment.

Drug approvals are not the only milestones. CoMMpass achieved its goal of enrolling its 1,000th patient in September 2015, Saias said.

“Some doctors are saying, ‘Why stop now?’” To continue enrolling participants, she said, “We just have to get the funding.”

CoMMpass just a part of MMRF’s three-step “end-to-end” strategy; collecting and sharing data is what the groups calls “the new currency” in the fight against cancer. Building a data bank, through its own efforts and through alliances with others (such as academic centers), comes first. The second step, which MMRF calls the Learning Network, is its system of distribution for sharing the information with researchers.

Finally, MMRF supports clinical research through the Multiple Myeloma Research Consortium, the network of researchers it funds who regularly present results at major conferences, including ASH.

As Saias explained, each step connects with the others. “The more data we have, the better decisions we can make on what clinical trials to bring to market,” she said.

Have attitudes about data sharing changed since MMRF started?

“Kathy will say there’s still a long way to go,” Saias said, but there’s been movement — and attention from the White House certainly raises awareness about the importance of taking part in data collection. Much work remains to educate patients, however.

There’s talk of a national data registry, Saias said. That level of collaboration among academia, government, and industry would be a huge undertaking. Compared to where MMRF was 11 years ago, she said, “Things are moving in the right direction.”

Mary Caffrey

Andrea Lynn Cancer Fund Wants to Ease Financial Toxicity for Patients

Thea's Star of Hope: How Small Cancer Funds Can Make a Big Difference

MMRF: Sharing Data, the "New Currency" in Precision Medicine

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