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As the Northern Nevada Children’s Cancer Foundation prepares to attend the 2014 Childhood Cancer Action Days on Capitol Hill, we look back at how far we have come in just a year. With the help of a generous donation to NNCCF, we are proud to announce that we are expanding our program to include support for adolescents diagnosed with childhood cancer before their 21st birthday and through treatment until their 23rd birthday, a group often referred to as Adolescents and Young Adults (AYA). Being able to serve this age group helps to align NNCCF with other national organizations, brings NNCCF to a whole new level of care and allows help to extend to a greater number of people. Previously NNCCF was only able to help those diagnosed before their 18th birthday.
In addition to the program expansion, Nevada has passed the Oral Chemotherapy Parity Law. NNCCF is relieved to see the shift in legislation now allowing families to receive oral chemotherapy without the burden of extremely high co-pays. According to the International Myeloma Foundation, traditionally, IV chemotherapy treatments are covered under a health plan’s medical benefit where the patient is required to pay an office visit copay, usually between $20 and $30. Conversely, oral anticancer medications are covered under a health plan’s prescription benefit and, many times, patients are responsible for extremely high and unmanageable copays, creating an enormous barrier for patients to access orally administered drugs. According to a recent study published in the Journal of Oncology Practice and American Journal of Managed Care, 10% of cancer patients failed to fill their initial prescriptions for oral anticancer medications due to high out-of-pocket costs.
Legislative Solution
In an effort to remove barriers to accessing life-saving treatments for cancer patients, Nevada implemented legislation for health policies issued or renewed on or after January 1, 2015. This law requires health policies that provide coverage for the treatment of cancer through chemotherapy must not require a co-payment, co-insurance or deductible of more than $100 per prescription for orally administered anticancer treatment. Additionally, plans may not increase the out-of-pocket cost to patients to achieve compliance.
What Does This Mean for Patients?
If a patient is privately insured (the law does not apply to Medicare or Medicare supplemental plans), and their plan covers chemotherapy, an FDA-approved, orally administered drug should have a maximum of $100 co-payment per prescription.
Along with all of these positive changes, the Nevada Cancer Coalition is currently in the process of re-writing the strategic plan for the state. Moving forward, NNCCF will have a voice in this plan and the NNCCF team is excited to see what Childhood Cancer Action Days will bring at the end of June.
Treatment Update: T-cell Therapy
By: Natalie Van Hoozer
T-cell therapy is an up and coming cancer treatment process. Some of our own northern Nevada kids have received or are currently receiving this treatment. T-cell therapy, also called “immunotherapy”, utilizes the existing immune cells in a person’s body to kill cancer cells.
T-cell therapy has been used in clinical trials for patients with B-cell cancers. These include acute lymphoblastic leukemia (ALL), B-cell non-Hodgkin lymphoma (NHL), and the adult cancer chronic lymphocytic leukemia (CLL).
As the Children’s Hospital of Philadelphia states, the T-cell therapy clinical trial produced some noticeable figures:
– 27 of the 30 patients with ALL went into complete remission for a time after receiving this T-cell therapy.
– 19 of the 30 are still in remission.
– 7 of the 30 experienced a recurrence of the disease.
Here is how the T-cell therapy process works:
Initially, people with certain leukemias and lymphomas, like ALL, NHL, and CLL, have cancerous B-cells. These cells are part of the immune system and therefore are not detected as harmful by the other cells of the immune system, even when they become cancerous. T-cell therapy attempts to solve this problem by altering T-cells, which are also part of the immune system, to detect these cancerous B-cells.
This alteration requires extraction of T-cells from the patient. These T-cells are then programmed to detect a certain protein that is only present on the surface of B-cells. Once, “programmed,” these T-cells are placed back into the patient, where they kill B-cells, cancerous and noncancerous alike. The fact that they kill healthy B-cells is treatable. The important thing to note about this step is that these T-cells are able to continue to flourish inside the patient and even multiply, allowing them to kill B-cells for extended periods of time.
Why T-cell therapy matters:
– It’s personalized. A patient’s own T-cells are used to go after that patient’s specific type of cancer.
– It could potentially be a less invasive alternative to stem cell transplants, which are currently the major treatment for people with ALL. While stem cell transplants are effective for many patients, they can be dangerous and taxing to undergo.
Currently a main side effect of T-cell therapy is cytokine release syndrome, an immune response that can cause the hormone cytokine to trigger fever, aches, drops in blood pressure, and breathing trouble. However, this is currently being combated by immunomodulating drugs, which are now being incorporated into T-cell therapy.
It is also important to note that T-cell therapy is for patients who have not responded to standard chemotherapy and whose disease returns after a bone marrow transplant. What’s more, the number of patients who have received this treatment is small, so further trials will need to be conducted to obtain more concrete results.
However, with the Breakthrough Therapy award from the U.S. Food and Drug Administration in July of 2014, this treatment provides hope for the future. Hopefully, T-cell therapy can help in the fight against cancers like ALL.
By Natalie Van Hoozer
There is one topic that is always relevant to charity organizations: the use of funds. Many people who would like to donate money to charities hold reservations when donating because they are unsure where those funds might ultimately go.
We at NNCCF agree that these concerns are completely valid. Recently, four related cancer charities (one of which was a children’s cancer organization) were charged with fraud by the Federal Trade Commission.
As unfortunate as this occurrence is, it is an excellent reminder that, before you make your final decision about where to make a donation, it is wise to look at statistics about the nonprofit in question.
What You Can Do:
As the article Know How Your Charitable Donations Will Be Spent Before You Give by Clay Johnson states, a large amount of nonprofit data is available to the public, it’s like researching anything online! A Google search alone can reveal some helpful information about most organizations.
What Can Help You:
Specifically, the IRS Form 990 is commonly available, detailed, and has black-and-white information about how a nonprofit spends its money. Many 990’s are available with an Internet search, and there are also sites like GuideStar which provide 990s as long as one completes a free registration.
The legitimacy and impact of nonprofits is a common question, and there are many articles, websites, and organizations dedicated to explaining how to evaluate if a nonprofit is accomplishing goals that are in-line with how you would like your money to be spent. GiveWell.org is one such site, but many other sites are easily revealed through searching.
What If You Have Trouble Finding Information With a General Search?
If an organization’s information is not being made apparent with a 990 form or through other online resources, there are several other ways to obtain information. If an organization is just getting started or is small, that organization may not have a 990. They may also be small enough that they work with a sponsor organization. If there is a sponsor, it is wise to look into that organization’s spending to see where your money would end up upon donation. As a general rule, it is wise to try to understand the different organizations involved with the organization in question. Also, when considering small organizations, you may also want to try to contact the organization directly. The executive director or other staff person may respond to questions better than a large organization would.
In regards to NNCCF specifically, is important to note that 76% of our revenue goes to Programs and Services while 8% goes to Fundraising and 16% goes to Management and Development. If you would like to see this breakdown with helpful visuals, please take a look at our Annual Report on our website.
Our extensive toy cabinet is a beacon of light for the children who enter our door. The toy cabinet offers an escape from treatment and a way to reconnect through games, puzzles, crafts, toys, and more. Children battling cancer and their siblings are encouraged to choose a brand new toy from the cabinet. Toys are also given to children in their new family care packages.
In efforts to keep our toy cabinet stocked, we encourage you to follow these lists of what works best with children who have long trips to treatment or hospital stays in a small room.
For younger children:
For teens:
Toys to avoid:
Plush animals and dolls – these can be difficult to clean and can be hazardous to children in treatment with compromised immune systems.
Donating blood helps more than trauma victims, it can save the life of a child with cancer. According to the American Cancer Society, many children diagnosed with cancer need blood transfusions because cancers of the blood and bone marrow cause low blood counts. Treatments used to combat childhood cancers can also impair blood cell production in the bone marrow.
Victoria was rushed to the hospital and needed a blood transfusion upon her diagnosis of cancer. Many children, like Victoria, end up in the hospital to treat low blood counts and its symptoms. Her blood work showed that her bone marrow was not producing blood cells, and the PICU was waiting for her arrival.
“We drove to the hospital and when we got there, they already had a PICU room set up for me,” said Victoria. “A couple doctors came in and discussed treatment plans while nurses pumped me full of blood.”
A child being treated for cancer may need platelets, red blood cells or white blood cells. A blood donor can choose to donate whole blood or platelets – both having benefits to cancer patients. According to United Blood Services, every 30 seconds someone needs platelets.
Many NNCCF staff members donate blood up to three times a year in support of the many local children affected by cancer.
“We commonly hear from our families that their child received a transfusion,” said Lindsey. “Donating blood gives me the opportunity to save three lives – those lives could be the children we serve at NNCCF.”
Lindsey and Lizzie donated today at the United Blood Services mobile blood drive held at Signature Landscapes in Reno. The next drive will be in September 2018 – contact Bobbie Merrigan at Bobbie@ryderhomes.com for availability and to schedule an appointment time. There are many other locations accepting donations throughout the year.
By donating blood, a child living in northern Nevada that is diagnosed with cancer can continue to overcome the disease. Visit United Blood Services to schedule your appointment today.
The Nevada Cancer Coalition donated an automatic sunscreen dispenser and a supply of sunscreen for 200+ applications to the Northern Nevada Children’s Cancer Foundation.
“We encourage our kids to be kids, and are grateful for the opportunity to supply our families with sunscreen,” said Jessica Langley, NNCCF Community Outreach Coordinator, “It’s just one extra way we can support our community against cancer.”
NNCCF will provide sunscreen to families, supporters, and community members at no cost.
Read the story by This is Reno here:
Three northern Nevada nonprofits received free automatic sunscreen dispensers and a supply of sunscreen through a community donation program launched by Nevada Cancer Coalition (NCC). The organizations selected through an application process include Community Health Alliance Record Street Health Center for the Homeless, Truckee Meadows Parks Foundation (TMPF), and Northern Nevada Children’s Cancer Foundation.
“Wearing sunscreen is one of the easiest ways to prevent skin cancer, but often people forget to put it on before heading outdoors,” said Cari Herington, executive director at Nevada Cancer Coalition. Placing free sunscreen dispensers in accessible outdoor locations has shown to increase people’s use of sunscreen and other sun-protective measures in cities such as Boston, Atlanta, and Tampa.
Community Health Alliance’s Record Street Health Center for the Homeless provides comprehensive health care services to more than 1,000 patients annually. The sunscreen dispenser they received is available for use by anyone being served at the downtown Reno Homeless Campus on Record Street. The sunscreen dispenser donations were made by NCC in recognition of Skin Cancer Detection and Prevention Month, recognized each May, and are part of NCC’s Sun Smart Nevada program. Sun Smart Nevada is building programs for sun safety and skin cancer prevention in schools, workplaces, and outdoor recreational areas throughout the state. “Through our dispenser donation program, we hope to give community partners the tools to help the people they serve stay healthy and prevent skin cancer,” said Herington.
TMPF provides free STEM, standards-based curriculum for majority free-reduced lunch student population schools that uses citizen science to engage kids with their local parks. The organization plans to use its sunscreen dispenser for the Student Stewards program and also for TMPF camp programs, guided walks, and during special events.
Northern Nevada Children’s Cancer Foundation, among many other services, encourages families to spend time together and to never lose their fun factor amidst their cancer journey. The sunscreen dispenser will be available for families to use when they visit the Foundation’s office and will be used during multiple outdoor events that support the Foundation each year.
In the U.S. skin cancer is the most commonly diagnosed cancer, and in Nevada, it is estimated that this year 790 people will be diagnosed with melanoma, the deadliest form. The number one cause of skin cancer is exposure to ultraviolet (UV) rays from the sun. Sunburns at any age are dangerous, however, one or more blistering sunburns in childhood or as a teenager can more than double one’s risk of melanoma later in life.
The Northern Nevada Children’s Cancer Foundation will be advocating for important childhood cancer issues before Congress this Tuesday, April 24. NNCCF Executive Director, Mary Powell, and childhood cancer survivor, Johnny Hartman, will meet with Nevada state legislators on Capitol Hill to advocate for research dollars designated to childhood cancer.
2017 Childhood Cancer Action Days supporting the STAR Act on Capitol Hill
“It is important our representatives are in touch with the needs of families in our community experiencing childhood cancer,” said Powell. “Access to better healthcare, improved treatments, and the hope for a cure are all issues we encounter in the work we do in northern Nevada.”
From the moment Hartman completed treatment and was considered “cancer free” he wanted to be an advocate for the cause. Sharing his story in Washington D.C. helps remind politicians that childhood cancer isn’t just a statistic on paper, but it affects real, living and breathing, standing-in-front-of-you kids.
“I am passionate about being an advocate for childhood cancer because I want to do everything in my power to make sure children do not have to go through what I faced during my treatment,” said Hartman. “I feel honored to be a part of an organization that devotes their energy to help pediatric cancer patients and their brave families.”
This year, communities from across the United States come together in one unified voice to support the STAR Act. “The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act is the most comprehensive childhood cancer bill ever taken up by Congress. It would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences and enhance the quality of life for childhood cancer survivors.” – AllianceForChildhoodCancer.org
The main focus of Childhood Cancer Action Days is having the STAR Act passed by the House of Representatives and have a proper appropriation of funding.
“I am most looking forward to bringing awareness to our country’s lawmakers and hopefully making a difference in the lives of young cancer warriors all over the United States by getting important and helpful legislation passed,” said Hartman.
Powell and Hartman are prepared and ready to show members of Congress that childhood cancer needs immediate attention for research and funding. Although the Northern Nevada Children’s Cancer Foundation is not a state or federally funded nonprofit, advocating for awareness and research is part of the foundation’s mission.
