What are cancer foundations and advocates and how do they help families during their cancer journey? The following story is a perfect example.

At the time of his cancer diagnosis, Zein was an energetic six-year-old, practicing for his red belt in Tae Kwon Do and excited about graduating from kindergarten. His parents, Radwa and Tamer, committed to finding him the best possible treatments. Though their determination and faith were strong, they soon found that cancer treatment can be a very complicated process.

Zein with his Dad, Tamer

There seemed to be more questions than answers: what treatments were appropriate for a young child, what treatments were effective, how do you navigate a clinical trial in another part of the country? And on top of these crucial questions were other questions about how to keep up with other family needs while supporting Zein. They knew support was needed to guide them through their cancer journey, wherever it took them. At this point they were introduced to the non-profit organization Here to Serve, and the Founder, Katie Quintas. Here to Serve has acted as not only an advocate, but a lifeline for many families over the past 12 years, and Katie was able to help them with daily life challenges as well as connect them with the Lazarex Cancer Foundation.

Lazarex Cancer Foundation’s mission is to improve patient access to cancer clinical trials nationwide. They are a public charity, with 70% of their operating expenses coming from individual donors. The following are some of their statistics since they were founded in 2006:

• Assisted over 7,432 patients with financial assistance and navigation for FDA clinical trial participation
• Expended $21,662,226 on program services
• Patients from all 50 states
• Served patients with all classifications of cancer in hundreds of clinical trials at more than 200 investigational sites nationwide
• Patients range in age from 1 to 102 years, with diverse racial and ethnic backgrounds

And these are their annual statistics for 2021:

• Assisted 1,247 patients with financial reimbursements and navigation for FDA clinical trial participation
• Dollars expended on program services: $2,961,795
• Percentage of donations applied directly to program services: 90%
• Volunteer hours: 2378.5

Lazarex has three programs that help them achieve their goals:

Lazarex Care Program

Focuses on improving the outcome of cancer care for advanced stage cancer patients, and the medically underserved, by identifying FDA clinical trial options, providing assistance with out-of-pocket costs for clinical trial participation and a travel companion, and facilitating community outreach and engagement.

Lazarex Impact Program

Aims to generate a sustainable proof of concept action plan to transform the status quo of clinical trial recruitment, enrollment, retention, minority participation, completion, and translational science – providing equitable and timely access to cancer discovery for all patients.

Lazarex Cancer Wellness HUBs

Provide “safe spaces” for at risk community members to talk about health concerns in relation to cancer and explore options from prevention through treatment and clinical trials. The HUB is imbedded within the community to manage the cancer journey and provide the greatest opportunity for a successful result.

How did these programs and goals translate for Zein and his family?

Lazarex was able to take Zein and his entire family of four to Sloan Kettering in New York, where he participated in a clinical trial. Lazarex provided transportation costs (airfare, gas, rental cars, taxi fare, parking/tolls), lodging costs, an advocate to travel with them, and more.

This was truly a lifesaver for Zein who underwent a clinical trial and surgery for his cancer that had spread to his brain offering limited treatment options. We are happy to share that his surgery and treatment were a success, and he will turn 16 in May.

Unfortunately, that was not the end of his cancer battle. After surviving cancer spreading to his brain, he battled cancer two more times, including a secondary cancer from the harsh chemotherapy and radiation treatments. Since he was six, Zein beat four different cancers. He is our hero and a true example of faith and determination.

Are there other organizations that can provide assistance with our family’s cancer journey?

Yes, and they tend to fall into two rather distinct categories. The first category being large organizations that focus primarily on raising funds for cancer research. These would be organizations such as The American Cancer Society and The National Foundation for Cancer Research. They offer the latest news and information about all forms of cancer, treatment, prevention, education and fund cancer research. A worthy mission, however often these organizations offer limited at-home assistant to families after a cancer diagnosis. The second category are organizations dedicated to assisting with immediate needs after diagnosis. 

According to Katie Quintas of Here to Serve, the following list of organizations have an excellent track record of providing more timely (and targeted) financial aide to families. There are other types of aid for families during treatment, however, the following organizations are focused on financial aid. Feel free to contact Here to Serve for more information about these organizations or others they are familiar with.

Co-Pay Assistance Programs

HealthWell Foundation

The HealthWell Foundation provides financial assistance to eligible individuals to cover coinsurance, copayments, health care premiums and deductibles for certain medications and therapies. If you’ve been prescribed a medication and your insurance company covers it, but you still cannot afford the coinsurance or copayment required, the HealthWell Foundation may be able to assist you by paying for part of your costs associated with the medication. Also, if you are eligible for health insurance, but cannot afford the insurance premium, they may be able to assist with your insurance premium.

Eligibility requirements are based on the individual’s medical, financial and insurance situation.  To inquire about eligibility, visit https://www.healthwellfoundation.org/

Or call 1-800-675-8416

CancerCare Co-Payment Assistance Foundation

CancerCare® Co-Payment Assistance Foundation (CCAF) is a nonprofit organization dedicated to helping you afford your co-payments for chemotherapy and targeted treatment drugs. To inquire about eligibility visit http://cancercarecopay.org/eligibility/

To apply: http://cancercarecopay.org/apply/

Or call 866-55-COPAY (866-552-6729) or (212) 601-9750

The Leukemia and Lymphoma Society’s Co-Pay Assistance Program

The Leukemia & Lymphoma Society (LLS) Co-Pay Assistance Program helps you pay your insurance premiums and meet co-pay obligations. They will also help you find additional sources of financial aid. The Co-Pay Assistance Program offers financial help toward:

• Blood cancer treatment-related co-payments
• Private health insurance premiums
• Medicare Part B, Medicare Plan D, Medicare Supplementary Health Insurance, Medicare Advantage premium, Medicaid Spend-down or co-pay obligations

Visit http://www.lls.org/support/financial-support/co-pay-assistance-program 

The Pink Fund

The Pink Fund distributes short-term financial aid, for basic living expenses, on behalf of breast cancer patients who have lost all or a part of their income during active treatment. Payments are made directly to the patient’s creditors. Basic living expenses considered are:

• Health insurance premiums
• Mortgage or rent payments
• Car payments, car insurance, utilities and car repairs.

The Pink Fund does not make payments for any medical treatments, prescription drugs (including hormone therapy), medical co-pays, insurance deductibles, prostheses, wigs, food, and gasoline. Short term is defined as a period of up to three consecutive months of non-medical financial assistance with a cap of $3,000, based on available funding.

To find out if you qualify, visit http://www.pinkfund.org/do-i-qualify/

21^st Century C.A.R.E.

We offer patients financial assistance for incidental expenses related to: transportation to and from treatments, follow-up visits related to cancer-care, childcare during treatment, temporary housing due to geographical distance from the treatment center, medical supplies and much more. To be eligible: Must have a social security number, must be working, disabled, a student, or retired. Must be referred by a qualified physician

Must be currently under treatment for cancer, be within 6 months of a cancer diagnosis, have completed treatment within 6 months, or be in need of cancer screening

Download application for your physician to fill out: http://21stcenturycare.org/physicians.asp

(888) 850-1622

Beckstrand Cancer Foundation

Provides direct financial assistance to selected L.A. County cities for community resources and advocacy, to cancers patients who are actively receiving treatment. Patients receiving only hormone suppressing medications are not considered in active treatment, and are not eligible. All information provided will be checked thoroughly for validity including proof of diagnosis, income and residency. Following cities in Los Angeles County: Artesia, Cerritos, Diamond Bar, Hawaiian Gardens, La Habra Heights, Lakewood, La Mirada, Long Beach, Pomona, Rowland Heights, Santa Fe Springs, Whittier

Visit www.beckstrand.org  or call (949) 955-0099

Bloom Again Foundation

Recipients of gifts from Bloom Again Foundation are typically referred by community agencies familiar with women and their circumstances.  Monies are distributed based on need, with need being defined as financially vulnerable working women living at or below the federally defined poverty levels.  All or some of the following information may be asked of those applying for financial assistance from Bloom Again Foundation.

http://www.bloomagain.org
221 E Walnut Street Suite 245, Pasadena, CA

Cancer Care

Financial assistance and resources.  Stages 1-3 $100 up to $300, can reapply once every 12 months. Spanish available. Additional Celgene Grant for metastatic patients for $400 for transportation costs for treatment. Offers full or partial assistance with eligible co-payment insurance costs. You must be covered by private insurance or Medicare.

Get You There Grants
(800) 813-4673
http://www.cancercare.org

CancerCare Co-Pay
www.cancercarecopay.org
(866) 552-6729

Cancer Financial Assistance Coalition (CFAC)

CFAC is a coalition of financial assistance organizations joining forces to help cancer patients experience better health and well-being by limiting financial challenges.  Users can search a national database for organizations that help with a specific cancer diagnosis; or, find resources for a specific type of assistance or need.

www.cancerfac.org/

Prescription Drugs Assistance Programs

Patient Access Network Foundation (PAN)

The Patient Access Network (PAN) Foundation is a national nonprofit organization dedicated to helping insured people living with chronic, life-threatening and rare diseases with the out-of-pocket costs for their prescribed medications.

To find out if you quality, call 1-866-316-7263  or visit https://www.panapply.org/

RxHope

RxHope is a patient advocacy organization that makes the patient assistance process as easy and comfortable as possible for the patient, the healthcare provider and the pharmaceutical company. As a web-based patient assistance resource, RxHope helps patients complete patient assistance applications, processes, fulfills and tracks requests for patient assistance programs for people needing help paying for their medications.

Your physician, office manager, or social worker completes the Patient Assistance Application on RxHope and submits it to the pharmaceutical companies on your behalf. You can also start the application process, but your physician’s office must complete the application.

Visit https://www.rxhope.com/home.aspx for more information.

Chronic Disease Fund

Co-payment assistance for pharmaceutical products for patients with private insurance or Medicare part D. Patients who utilize a participating pharmacy can have their out of pocket expenses remitted by the fund directly to the pharmacy. Patients using non-participating pharmacies can submit receipts for reimbursement. The following conditions covered are: Breast Cancer, Multiple Myeloma, Colon Cancer and Non-small Cell Lung Cancer

Visit www.cdfund.org or call 1-877-968-7233

Partnership for Prescription Assistance (PPA)

Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies. Includes assistance for the uninsured.

Visit www.pparx.org or call 1-888-477-2669

Patient Advocate Foundation’s Co-Pay Relief Program

Provides direct co-payment assistance for pharmaceutical products to insured patients (including Medicare Part D beneficiaries) who financially and medically qualify. Offers assistance for the following specific conditions: Breast Cancer, Colon Cancer. Head and Neck, Lung Cancer, Lymphoma, Kidney Cancer, Malignant Brain Tumors, Multiple Myeloma, Pancreatic Cancer, Prostate Cancer, Sarcoma, Secondary issues as a result of cancer treatment. Visit www.copays.org or call 1-866-512-3861

National Children’s Cancer Society Transportation Fund

Helps with the financial burden of travel and lodging for families who have a child with cancer.  Includes transportation expenses such as mileage and airfare and lodging when a child needs to stay near the hospital for treatment and nonprofit lodging is unavailable.

Visit http://www.thenccs.org/financial-assistance

National Children’s Cancer Society Emergency Assistance Fund

The Emergency Assistance Fund provides $200 in emergency assistance per year to families who have a child that has been inpatient or away from home for (30) consecutive days within the past three months. Assistance may be used for mortgage, rent, utility payments, childcare, health insurance premiums, car expenses or treatment-related expenses such as meals away from home, prescriptions, and parking.

Visit https://www.thenccs.org/financial-aid

How do you know which organizations are trustworthy?

A good place to start is by looking them up through GuideStar, Charity Navigator, or Great Nonprofits. Be aware that Charity Navigator limits their reviews to large nonprofits. There are excellent mid-sized nonprofit organizations that are not on Charity Navigator, but are reviewed on GuideStar and Great Nonprofits. These three watchdog organizations are trusted rating agencies that evaluate charities in every area.

The non-profit Here to Serve has been working with families for more than 12 years to provide tangible at-home assistance through this challenging time in a family’s life. Their website has detailed information about their programs, and the testimonials from families are stellar. They are currently accepting new families and hope, if you know a family with children who recently received a cancer diagnosis, you will not hesitate to contact them.

A pediatric cancer journey is long, with many challenges. These organizations all have different missions, but ultimately are there to support you and your family. Here to Serve is the only national nonprofit that solely focuses on the cancer journey helping families with their day-to-day life including finances, meals, housekeeping, childcare, pet care, transportation and more.

About the Author

Valerie Radford Cox has had a fulfilling career in the field of communications and institutional advancement. She is enjoying sharing her skills to provide information to the pediatric cancer community through the non-profit Here to Serve.

All content in this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.