“Crowd Funding:” Paying Medical Bills With a Little Help From Your Friends (and Strangers Too!)

An interesting article appearing in USA Today on January 14, written by Cheryl Alkon, describes the use of “crowd funding” to assist individuals who may be experiencing tough financial times — or even bankruptcy — due to, among other things, medical costs, including those incurred to treat cancer.

What is “Crowd Funding?”

The term “crowd funding” describes the collective effort of individuals who network and pool their money, generally through the Internet, to support efforts initiated by other people or organizations. For example, crowd funding can be used to support disaster relief, citizen journalism, political campaigns, startup company funding, movie or software development, and scientific research.

Crowd funding is even taking on national significance through enacted federal legislation. In April 2012, President Obama signed the JOBS (Jumpstart Our Business Startups) Act, which enables entrepreneurs, start-ups, and small businesses to raise funds and gather investors through equity crowd funding.

An interesting article appearing in USA Today on January 14, written by Cheryl Alkon, describes the use of crowd funding to assist individuals who may be experiencing tough financial times — or even bankruptcy — due to, among other things, medical costs, including those incurred to treat cancer. The crowd funding websites listed by Alkon include: the Human Tribe Project (humantribeproject.com), GiveForward (giveforward.com), FundRazr (fundrazr.com), and GoFundMe (gofundme.com).

It is estimated that $2.8 billion was raised by all types of crowdfunding websites in 2012.

In an era when social media and networking reign supreme, most individuals have “friends,” and even “friends of friends.” At this point, you should be thinking about The Beatles song entitled, A Little Help From My Friends, which the group recorded on their Sgt. Pepper’s Lonely Hearts Club Band album in 1967. Or perhaps, you prefer Joe Cocker’s cover version of the song, which he sang at the Woodstock Music Festival in 1969. But, I digress. So, let’s turn to a great example of crowding funding used to support medical costs.

The Genesis of the Human Tribe Project

Group Formal

The Human Tribe Project Leadership Team: (left-to-right) Ryan Foutz, Jaclyn Foutz, Matt Foutz, and Steve Bever.

The concept of crowd funding within the context of cancer treatment is best understood through the genesis of The Human Tribe Project.

In early 2008, Jaclyn Foutz learned that her longtime friend, Kindra McLennan, had been diagnosed with a rare form of cervical cancer. Not knowing how to help Kindra, who lived 1,500 miles away, Jaclyn did what anyone thirty-something would do: she turned to Google®.

Her search turned up various websites listing ways to help support and encourage a friend through cancer, and of those, some even suggested fundraising ideas. Realizing that they could not be there to hold Kindra’s hand through the chemotherapy and radiation, Jaclyn and her friends decided to raise money for Kindra and her husband to relieve the financial burden associated with her cancer treatment. Jaclyn identified websites suggesting fundraising options, but all seemed too local and small in scope to have the kind of impact that she and her friends wanted. At the time, Jaclyn’s husband, Ryan Foutz, his brother, Matt Foutz, and Ryan’s childhood friend, Steve Bever, owned a wholesale jewelry company. They donated turquoise beads, and Jaclyn and her friends sold turquoise necklaces in support of Kindra. They sold the necklaces in-person to friends, relatives and coworkers, and by e-mail to people in Kindra’s support network all across the country.

The project was a huge success; they sold 350 necklaces and raised $10,000. They were inspired by the breadth of Kindra’s network of friends and the willingness of complete strangers to buy the necklaces.

Initially, Kindra refused to take handouts from her friends and family; however, when she knew her friends and family were receiving a necklace in return for their monetary donation, her concerns were alleviated. And, when Kindra saw everyone from her best friend to her chemotherapy nurse wearing the necklaces, she felt an emotional support as great as the financial support that she had received.

After extensive research, Jaclyn and Ryan learned that there were no resources available to do what they did on a larger, commercial scale. They found companies selling products in an effort to raise money for non-profits, foundations, or research institutions, but none raised money directly for individuals during their time of need.

During their research process, they were astonished to learn about the financial burden that individuals suffering from an illness often face. For example, with respect to breast cancer alone, it is estimated that out-of-pocket expenditures and lost-income costs for women with insurance coverage average $1,455.00 per month. The majority of those out-of-pocket costs are related to co-payments, hospitalizations, and specialist visits.

In 2006, twenty-five percent of cancer patients reported that they had to use all or most of their savings to deal with cancer treatment costs. Approximately fifty percent of all personal bankruptcies filed in the U.S. are filed due to medical expenses. Also, researchers have found that there is a strong connection between emotional support and healthcare outcomes. Jaclyn and Ryan found these statistics astounding; there was a better way to aid individuals and enhance the benefits of strong support networks.

Through all of this, Jaclyn, Ryan, Matt, and Steve saw firsthand the power of the humanitarian spirit and how that spirit connects us all. It was from this experience that Human Tribe Project was born.

Ultimately, Kindra McLennan used some of the funds raised on the website to take a trip to Las Vegas for her 30th birthday, four months before she died. “If that’s what you feel you need to use the money for, that’s one of the things you can do when you know the people who are donating to you,” Jaclyn Foutz says. The Human Tribe Project website launched  in early 2009, six months after McLennan’s death.

Not only were Kindra’s friends and family able to raise approximately $10,000 on her behalf, but Kindra could see their love and support in every necklace that was worn. The Human Tribe Project website is dedicated to Kindra’s memory.

After helping establish the Human Tribe project, Matt Foutz never anticipated using the service for his own family. Two years ago, Mathew’s daughter Mia was diagnosed with a brain tumor, called a “medulloblastoma,” at the age of five. Mia received surgery, months of chemotherapy, and radiation treatment, the net result of which was permanent memory, mobility and endocrine issues. Through crowd funding, Matthew Foutz has already raised $11,520 for Mia.

Thoughts From Those In the Field

The USA Today article cites several individuals who are actively involved, directly or indirectly, in the field of crowd funding.

Catherine Chapman, a philanthropic consultant with Fullanthropy, a Louisville, Ky., consulting firm that advises non-profits on charitable best practices said:

Crowd funding is doing what has always been done, but taking the technology we have to make it viral. People give on these sites often because they have been asked to do so by a friend or a friend of a friend. The personal element is a lot more compelling than sending a check to a charity. Doing that is anonymous and you can’t relate, but if it’s your friend who has cancer, you want to help.”

Daryl Hatton, the founder and CEO of FundRazr, said:

“People know who they are donating to, but one of the big surprises is that people saw how many complete strangers were donating to them. The message has to really resonate with your friends, or else it won’t go anywhere. If you don’t get that social proof, then people don’t get donations. Our natural skepticism kicks in, and they hold back on hitting that button.”

According to the USA Today article, it appears that scams are rare. “Scammers tend to lack social-media followings, as they don’t want to identify themselves,” said Hatton. “Those with integrity have networks. To give you scale, approximately one in 5,000 medical FundRazrs get shut down.”

In the end, a cancer patient can use a crowdfunding site to tell his or her story about why money is needed, using blogs and updates to keep potential donors informed. Most websites collect donations and forward them directly to the person in need. The websites can take out a small portion of the donation for administrative and other costs, which can range from 5%-20% of funds raised. It is important to note that most crowd funding websites are not tax-exempt, non-profit organizations, and therefore, donations are not considered tax-deductible.

The USA Today article provides a few common sense tips to those who may be interested in crowd funding: (i) perform thorough due diligence on various websites beyond looking for a nice appearance (i.e., evaluate news stories, customer reviews, complaints,  etc.); (ii) research online tips for writing a compelling narrative about yourself and the need for money; (iii) give frequent updates (as most blog writers learn quickly); and (iv) know that fundraising is time-consuming, but realize that you are your own best advocate.

There is a saying that “to the world you may only be one person, but to one person you may be the world.” For those of you who may be thinking about helping a cancer survivor through crowd funding, keep in mind that “grand” opportunities to help others seldom arise, but small, yet critical, opportunities surround us everyday.

Sources:

“Crowdfunding” sites pay medical bills, raise hopes, written by Cheryl Alkon, USA Today, January 14, 2013.

“Company Background,” Media Packet, The Human Tribe Project, www.humantribeproject.com.

ENMD-2076 Monotherapy Demonstrates Anti-Cancer Activity in Recurrent, Platinum-Resistant Ovarian Clear Cell Carcinoma

An Aurora A/angiogenic kinase inhibitor named “ENMD-2076” demonstrated anti-cancer activity in recurrent, platinum-resistant epithelial ovarian cancer patients, including three patients with a difficult-to-treat subtype of the disease referred to as “clear cell carcinoma.”

An Aurora A/angiogenic kinase inhibitor named “ENMD-2076” demonstrated anti-cancer activity in recurrent, platinum-resistant epithelial ovarian cancer patients, including three patients with a difficult-to-treat subtype of the disease referred to as “clear cell carcinoma.” The trial drug results were reported in connection with a phase II clinical trial testing of ENMD-2076. The findings associated with ENMD-2076 were published in the January 2013 edition of the European Journal of Cancer.

ENMD-2076 is an orally-active, Aurora A/angiogenic kinase inhibitor with a unique kinase selectivity profile and multiple mechanisms of action. ENMD-2076 has been shown to inhibit a distinct profile of angiogenic tyrosine kinase targets in addition to the Aurora A kinase. Aurora kinases are key regulators of mitosis (cell division), and are often over-expressed in human cancers. ENMD-2076 also targets the VEGFR, Flt-3 and FGFR3 kinases which have been shown to play important roles in the pathology of several cancers.

The phase II trial was an open-label, single-arm Phase II study of single agent ENMD-2076 taken daily (orally). The study enrolled 64 patients, and the progression-free survival (PFS) rate at 6 months was 22%, with a median time-to-progression of 3.6 months. The median number of prior treatment regimens per patient was two. The most common adverse events were fatigue, hypertension and diarrhea, with the most significant events being hypertension and fatigue. Unfortunately, none of the markers of mitotic index or angiogenesis evaluated in the archival tissue samples obtained were predictive of greater benefit or resistance to ENMD-2076 treatment.

Based on the foregoing results, the clinical investigators concluded that ENMD-2076 possesses anti-cancer activity in recurrent, platinum-resistant ovarian cancer, and they observed  toxicities were similar to other protein kinase inhibitors. The clinical investigators also noted that additional studies with ENMD-2076 are warranted, especially in combination with active chemotherapeutic agents in platinum-resistant patients. The investigators added that further work to determine appropriate biomarkers for ENMD-2076 should be incorporated into new clinical studies.

The co-authors of the article include clinical investigators from the Memorial Sloan-Kettering Cancer Center, Indiana University Simon Cancer Center, University of Colorado, and University of Chicago in the U.S., as well as the Princess Margaret Hospital and Campbell Family Institute for Cancer Research in Toronto, Canada.

Ursula Matulonis, M.D., Medical Director, Gynecologic Oncology, Dana-Farber Cancer Institute

Ursula A. Matulonis, M.D., Medical Director, Gynecologic Oncology, Dana-Farber Cancer Institute

Lead study author Dr. Ursula A. Matulonis, who is the medical director of Gynecologic Oncology at the Dana-Farber Cancer Institute, commented on the publication as follows:

Epithelial ovarian cancer represents the 4th leading cause of cancer deaths among women in the United States. There is unmet medical needs to develop new drugs with fewer side effects and/or better efficacy to improve the quality and duration of life of the patients, especially those whose cancer is resistant to platinum treatment.

ENMD-2076 is a novel small molecule kinase inhibitor with unique combination of mechanisms of action that involve inhibition of several pathways key to tumor growth and survival including angiogenesis, proliferation, and the cell cycle. Based on pre-clinical and Phase 1 clinical studies of ENMD-2076, we believed that the drug candidate may play a role in fitting some of the unmet medical needs. This Phase 2 trial further demonstrates the anti-cancer activity of ENMD-2076 in yet a difficult to treat patient population of platinum-resistant ovarian cancer with tolerable side effects.”

Notably, Dr. Matulonis also commented on the anti-cancer activity of ENMD-2076 in three ovarian clear cell carcinoma patients as follows:

ENMD-2076 also showed anti-cancer activities in patients with clear cell carcinoma [CCC], a histological subtype considered as chemo-resistant. Two of three [CCC] patients recruited had longer PFS than the median with one patient in stable disease for over two years. As recent reports suggest VEGF is frequently expressed in clear cell cancers, this subtype might be particularly responsive to therapies that incorporate VEGF inhibition. Further clinical evaluations of ENMD-2076 may therefore be warranted in this patient subset either as a single agent or in combinations.” [emphasis added]

Ken Ren, Ph.D., EntreMed’s Chief Executive Officer, further commented:

We are very pleased and honored to have this Phase 2 trial data published in such an esteemed journal. This is a further endorsement of the global medical and science community on the clinical and scientific value of ENMD-2076 in ovarian cancer treatment. We truly believe that ENMD-2076 may potentially offer unique and competitive advantages for unmet medical needs in such difficult to treat oncology indications including platinum-resistant and/or clear cell ovarian cancer in improving the patients’ quality and duration of life. We are committed to the global clinical development of ENMD-2076 for cancer patients who might benefit from its therapy. With the support of clinical investigators like Dr. Matulonis, their commitment and dedication, and the support from our long term shareholders, we are confident that we can achieve our goal.”

About EntreMed

EntreMed, Inc. is a clinical-stage pharmaceutical company employing a drug development strategy primarily in the United States and China to develop targeted therapeutics for the global market. Its lead compound, ENMD-2076, a selective angiogenic kinase inhibitor, has completed several Phase 1 studies in solid tumors, multiple myeloma, and leukemia, and is currently completing a multi-center Phase 2 study in ovarian cancer. EntreMed, Inc. recently initiated a dual-institutional Phase 2 study of ENMD-2076 in triple-negative breast cancer. Additional information about EntreMed is available on the Company’s web site at www.entremed.com.

About ENMD-2076

ENMD-2076 is an orally-active, Aurora A/angiogenic kinase inhibitor with a unique kinase selectivity profile and multiple mechanisms of action. ENMD-2076 has been shown to inhibit a distinct profile of angiogenic tyrosine kinase targets in addition to the Aurora A kinase. Aurora kinases are key regulators of mitosis (cell division), and are often over-expressed in human cancers. ENMD-2076 also targets the VEGFR, Flt-3 and FGFR3 kinases which have been shown to play important roles in the pathology of several cancers. ENMD-2076 has shown promising activity in Phase 1 clinical trials in solid tumor cancers, leukemia, and multiple myeloma. ENMD-2076 is currently completing a Phase 2 trial for ovarian cancer. EntreMed, Inc. recently initiated a dual-institutional Phase 2 study of ENMD-2076 in triple-negative breast cancer.

ENMD-2076 received orphan drug designation from the United States Food and Drug Administration (FDA) for the treatment of ovarian cancer, multiple myeloma and acute myeloid leukemia (AML). In the United States, the Orphan Drug Act is intended to encourage companies to develop therapies for the treatment of diseases that affect fewer than 200,000 people in this country. Orphan drug designation provides seven years of market exclusivity that begins once ENMD-2076 receives FDA marketing approval. It also provides certain financial incentives that can help support the development of ENMD-2076.

Citation:

Matulonis UA, Lee J, Lasonde B, et. al. ENMD-2076, an oral inhibitor of angiogenic and proliferation kinases, has activity in recurrent, platinum resistant ovarian cancer. Eur J Cancer. 2013 Jan;49(1):121-31.doi:10.1016/j.ejca.2012.07.020. PubMed PMID: 22921155.

Additional Source:

Dana-Farber Cancer Institute’s Ursula A. Matulonis, M.D. Article on EntreMed’s ENMD-2076 Published in the European Journal of Cancer, EntreMed, Inc. Press Release, Sept. 6, 2012.

ENMD-2076 Phase II Ovarian Cancer Clinical Trial Protocol Summary:

A Phase 2 Study of Oral ENMD-2076 Administered to Patients With Platinum Resistant Ovarian Cancer, ClinicalTrials.gov Identifier: NCT01104675 (study ongoing, but not recruiting patients).

Glimmer of Hope: Johns Hopkins Uses Pap Smear Test Cervical Fluid to Detect Ovarian & Endometrial Cancers

Using cervical fluid obtained during routine Pap tests, scientists at the Johns Hopkins Kimmel Cancer Center have developed a test to detect ovarian and endometrial cancers. The investigators note that larger-scale studies are needed prior to clinical use on women. 

Using cervical fluid obtained during routine Pap tests, scientists at the Johns Hopkins Kimmel Cancer Center have developed a test to detect ovarian and endometrial cancers. Results of the experiments are published in the January 9 issue of the journal Science Translational Medicine.

In a pilot study, the “PapGene” test, which relies on genomic sequencing of cancer-specific mutations, accurately detected all 24 (100 percent) endometrial cancers and nine of 22 (41 percent) ovarian cancers. The endometrial cancers may have been easier to find because cells from those tumors do not have as far to travel as ovarian cancer cells. The Hopkins researchers will study whether inserting the Pap brush deeper, testing during different times of the menstrual cycle, or other factors might improve detection of ovarian cancer.

The investigators note that larger-scale studies are needed prior to clinical use on women, but they believe the test has the potential to pioneer genomic-based, cancer screening tests. [Emphasis added]

The Papanicolaou (Pap) test, during which cells collected from the cervix are examined for microscopic signs of cancer, is widely and successfully used to screen for cervical cancers. Today, many women’s Paps undergo an additional DNA-based test to see if they harbor the human papillomavirus (HPV), which can spur cervical cancer. However, no routine screening method is available for ovarian or endometrial cancers.

 Luis Diaz, M.D.

Luis Alberto Diaz, M.D.

Since the Pap test occasionally contains cells shed from the ovaries or endometrium, cancer cells arising from these organs could be present in the fluid as well, says Luis Diaz, M.D., associate professor of oncology at Johns Hopkins, as well as director of translational medicine at the Ludwig Center for Cancer Genetics and Therapeutics and director of the Swim Across America Laboratory, also at Johns Hopkins. The laboratory is sponsored by a volunteer organization that raises funds for cancer research through swim events. “Our genomic sequencing approach may offer the potential to detect these cancer cells in a scalable and cost-effective way,” adds Diaz.

Hear Dr. Diaz discuss the PapGene test research in this hyperlinked podcast, courtesy of the American Association for the Advancement of Science.

Cervical fluid of patients with gynecologic cancer carries normal cellular DNA mixed together with DNA from cancer cells, according to the investigators. The investigators’ task was to use genomic sequencing to distinguish cancerous from normal DNA.

The scientists had to determine the most common genetic changes in ovarian and endometrial cancers in order to prioritize which genomic regions to include in their test. They searched publicly available genome-wide studies of ovarian cancer, including those done by other Johns Hopkins investigators, to find mutations specific to ovarian cancer. Such genome-wide studies were not available for the most common type of endometrial cancer, so they conducted genome-wide sequencing studies on 22 of these endometrial cancers.

From the ovarian and endometrial cancer genome data, the Johns Hopkins-led team identified 12 of the most frequently mutated genes in both cancers and developed the PapGene test with this insight in mind.

The investigators then applied PapGene on Pap test samples from ovarian and endometrial cancer patients at The Johns Hopkins Hospital, Memorial Sloan-Kettering Cancer Center, the University of São Paulo in Brazil and ILSbio, a tissue bank. The new test detected both early- and late-stage disease in the endometrial and ovarian cancers tested. No healthy women in the control group were misclassified as having cancer.

Animation of PapGene:

Looking ahead, the investigators’ next steps include applying PapGene on more samples and working to increase the test’s sensitivity in detecting ovarian cancer. “Performing the test at different times during the menstrual cycle, inserting the cervical brush deeper into the cervical canal, and assessing more regions of the genome may boost the sensitivity,” says Chetan Bettegowda, M.D., Ph.D., assistant professor of neurosurgery at Johns Hopkins and a member of the Ludwig Center as well.

Together, ovarian and endometrial cancers are diagnosed in nearly 70,000 women in the United States each year, and about one-third of them will die from it. “Genomic-based tests could help detect ovarian and endometrial cancers early enough to cure more of them,” says graduate student Yuxuan Wang, who notes that the cost of the test could be similar to current cervical fluid HPV testing, which is less than $100.

PapGene is a high-sensitivity approach for the detection of cancer-specific DNA mutations, according to the investigators; however, false mutations can be erroneously created during the many steps — including amplification, sequencing and analysis — required to prepare the DNA collected from a Pap test specimen for sequencing. This required the investigators to build a safeguard into PapGene’s sequencing method, designed to weed out artifacts that could lead to misleading test results.

“If unaccounted for, artifacts could lead to a false positive test result and incorrectly indicate that a healthy person has cancer,” says graduate student Isaac Kinde.

Kinde added a unique genetic barcode — a random set of 14 DNA base pairs — to each DNA fragment at an initial stage of the sample preparation process. Although each DNA fragment is copied many times before eventually being sequenced, all of the newly copied DNA can be traced back to one original DNA molecule through their genetic barcodes. If the copies originating from the same DNA molecule do not all contain the same mutation, then an artifact is suspected and the mutation is disregarded. However, bonafide mutations, which exist in the sample before the initial barcoding step, will be present in all of the copies originating from the original DNA molecule.

The Johns Hopkins test results demonstrate that DNA from most endometrial and a fraction of ovarian cancers can be detected in a standard liquid-based Pap smear specimen obtained during routine pelvic examination. Although improvements need to be made before applying this test in a routine clinical manner, it represents a promising first step toward a broadly applicable screening methodology for the early detection of gynecologic malignancies.

“This is very encouraging, and it shows great potential,” said American Cancer Society genetics expert Michael Melner.

“We are a long way from being able to see any impact on our patients,” cautioned Dr. Shannon N. Westin of the University of Texas MD Anderson Cancer Center. Dr. Westin reviewed the research in an accompanying editorial, and said the ovarian cancer detection would need improvement if the test is to work. But Dr. Westin noted that ovarian cancer has poor survival rates because it’s rarely caught early. “If this screening test could identify ovarian cancer at an early stage, there would be a profound impact on patient outcomes and mortality,” Westin said.

More than 22,000 U.S. women are diagnosed with ovarian cancer each year, and more than 15,000 die. Symptoms such as bloating and pelvic or abdominal pain are seldom obvious until the cancer is more advanced, and numerous attempts at screening tests have failed.

Endometrial cancer affects about 47,000 U.S. women a year, and kills about 8,000. There is no screening test for it either, but most women are diagnosed early because of postmenopausal bleeding.

___________________________

Funding for the research was provided by Swim Across America, the Commonwealth Fund, the Hilton-Ludwig Cancer Prevention Initiative, the Virginia & D.K. Ludwig Fund for Cancer Research, the Experimental Therapeutics Center of the Memorial Sloan-Kettering Cancer Center, the Chia Family Foundation, The Honorable Tina Brozman Foundation, the United Negro College Fund/Merck Graduate Science Research Dissertation Fellowship, the Burroughs Wellcome Career Award for Medical Scientists, the National Colorectal Cancer Research Alliance and the National Institutes of Health’s National Cancer Institute (N01-CN-43309, CA129825, CA43460).

In addition to Kinde, Bettegowda, Wang and Diaz, investigators participating in the research include Jian Wu, Nishant Agrawal, Ie-Ming Shih, Robert Kurman, Robert Giuntoli, Richard Roden and James R. Eshleman from Johns Hopkins; Nickolas Papadopoulos, Kenneth Kinzler and Bert Vogelstein from the Ludwig Center at Johns Hopkins; Fanny Dao and Douglas A. Levine from Memorial Sloan-Kettering Cancer Center; and Jesus Paula Carvalho and Suely Kazue Nagahashi Marie from the University of São Paulo.

Papadopoulos, Kinzler, Vogelstein and Diaz are co-founders of Inostics and Personal Genome Diagnostics. They own stocks in the companies and are members of their Scientific Advisory Boards. Inostics and Personal Genome Diagnostics have licensed several patent applications from Johns Hopkins. These relationships are subject to certain restrictions under The Johns Hopkins University policy, and the terms of these arrangements are managed by the university in accordance with its conflict-of-interest policies.

____________________________

Citations:

I. Kinde, C. Bettegowda, Y. Wang, J. et. al. Evaluation of DNA from the Papanicolaou Test to Detect Ovarian and Endometrial Cancers. Sci. Transl. Med. 5, 167ra4 (2013).

S. N. Westin, G. B. Mills, A. P. Myers, Repurposing the Pap Smear: One Step Closer to Gynecologic Cancer Screening. Sci. Transl. Med. 5, 167ps1 (2013).

Additional Sources:

Johns Hopkins Scients Use Pap Test Fluid to Detect Ovarian, Endometrial Cancers, John Hopkins Medicine, Press Release, January 9, 2013.

Retooling Pap Test To Spot More Kinds Of Cancer, The Associated Press via National Public Radio, January 9, 2013.