A Proposal to Create the First Cancer Treatment Program on an American Indian Reservation

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INTRODUCTIONTuba City Regional Health Care Corporation (TCRHCC), a 501(c)(3) non-profit organization that contracts with the federal government to provide health care to Navajo, Hopi and Southern San Juan Paiute patients on the Navajo Nation, seeks philanthropic partners to help establish the first ever cancer treatment program on an American Indian reservation.

Ours is a pioneering effort to save lives that the Indian Health Service (IHS)1 does not address within its scope. The mission of IHS is to make primary health care available to American Indians. Specialty care—oncology—is beyond its mission. Consequently, our patients must travel hundreds of miles from home to access cancer treatment.

Cancer is the second leading cause of death on the Navajo Nation and, unlike other Americans, our cancer death rate is rising. The unavailability of local treatment often causes our patients to be diagnosed in advanced and incurable stages. The opportunity to eliminate this health disparity is a chance to provide both health and justice to this neglected population. See Attachment 1 for one Navajo woman story.

1The Indian Health Service, and agency with the Department of Health and Human Services, is responsible for providing federal health services to American Indians and Alaska Natives.The Snyder Act of 1921 (25 U.S.C.13), Indian Health Care Improvement Act of 1976 (25 U.S.C 1601, et seq.) and the Patient Protection and Affordable Care Act (42 USC 18001) comprise the basic legislative authority for the Indian Health Service.

BACKGROUNDIn an environment the U.S Census Bureau defines as being “frontier,” health professionals at our regional medical center and satellite clinics provide safe, accessible, quality, and culturally sensitive care to patients whose living conditions are health risks:

• 32% of their homes do not have electricity;• 38% of their homes do not have running water;• 60% of their homes do not have telephone services; and• 77% of their roads are unimproved, unmaintained dirt roads.

Our patients are geographically isolated and economically challenged:• 43% live below the federal poverty level;• Their per capita income is $10,695, half that of the rest Arizona ($25,680); and• Their median household income is $27,389, also half that of the rest of Arizona ($51,310).

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There are no oncologists on the Navajo Nation—a 27,000 square mile region that 175,000 people call home. To access the nearest cancer treatment, our patients must travel to Flagstaff, AZ, where there is one oncologist per 14,000 people. Our patients who live closest to Flagstaff, the lucky ones, travel 120 miles roundtrip for just one session of chemotherapy and 8,000 miles for a standard treatment regiment of 50 visits. Enduring the rough effects of chemotherapy, while traveling in a car for hours, is the punishing reality our patients with cancer suffer.

The urgent need to address this health care disparity is heightened by the fact that American Indians who reside within the Navajo Nation are disproportionally affected by more aggressive, deadlier subtypes of cancer. For example, Navajo men and women have higher incidents of myeloma, stomach, liver, gallbladder, cervical, and kidney cancer. While the cause for this is unclear, we know that cancer on the Navajo Nation is not due to the well-established and proven risk factor of smoking. Navajos do not smoke.2

Patriotism may ironically be their biggest cancer risk factor. During the atomic stampede that enabled the United States to win both WWII and the Cold War, the Navajo people signed up to mine uranium on their reservation. Navajos continue to pay a high price for American victories.

2Incidence of smoking among the Navajo is less than 1%.

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OPPORTUNITYOur cancer treatment initiative provides the opportunity to write a new chapter in the history of neglect on American Indian reservations. For the first time ever, a tribal health care facility will provide cancer treatment to tribal patients. We will provide:

• Early detection, treatment and management of cancer;• Translation of oncology terms into native language and concepts;• Culturally appropriate psycho-social services, which we will launch with our Bradley

Program grant from the Cancer Support Community;• Clinical Trials; and• Data collection.

A legacy of our involvement in Vice President Biden’s Cancer Moonshot is our partnership with the Cancer Support Community to create a sustainable cancer treatment model on the Navajo Nation. Please see Attachment 2 for a profile of our interdisciplinary team. Senior Leadership at the Arizona Health Care Cost Containment System, has already negotiated a waiver with Centers for Medicaid and Medicare Services to ensure a stream of reimbursement for our oncology program.

This effort is the first opportunity to demonstrate best practices by partnering with a tribal healthcare facility to bring oncology services to a tribal community. Our goal is for this effort to be replicated on other American Indian reservations elsewhere. Our hope is it inspires reconsideration of what tribal health care means everywhere.

523 abandoned uranium mines, with multiple radiation exposure pathways, still litter the Navajo Nation. Navajo people inhale radioactive dust, drink radioactive water, and eat the meat of animals who eat the plants that grow in radioactive soil. Some live in homes constructed of mill tailings, the radioactive byproduct of uranium mining.

REQUESTOur goal is to raise $6.3 million from multiple sources over twenty-four months, the start-up costs we need to pioneer this cancer program on the Navajo Nation. Our proposal is phase one (diagnosis and treatment) of a two phase (new cancer treatment facility) project.

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PHASE TWOOver the next 48 months–—fund raise, design and construct a 9,500 square feet building with a fully equipped linear accelerator suite at an estimated cost of $6.9 million (the linear accelerator alone costs $3 million).

CONCLUSIONJoin us to provide cancer treatment on the Navajo Nation, the first of its kind anywhere in the United States. In just 24 months, we can bring 21st century medicine to the Navajo Nation.

PHASE ONEMonths 1–12 Months 13–24Program & Personnel

AdministrationEquipmentPhysical SpacePersonnel (11FTEs)

• Oncologist

• Hematologist

• Pharmacist

• Infusion Nurse

• Nurse Navigator

• Social Worker

• Techs and Assistants

TOTAL

$100,400 $1,800,000 $83,000 $1,968,000

$3,951,400

$143,000$0$83,000 $2,095,000

$2,321,000

PHARMACYWe also need to raise $12.4 million for pharmacy costs (drugs, office, other). Although most of this cost is reimbursable, a pharmacy still requires upfront costs:Estimated reimbursements, as percentages:

• Medicare (15.5%)• Medicaid (26.9%)• HMO/PPO (24.5%)• Private (.4%)

TOTAL for Months 1–12: $5,037,000 TOTAL for Months 13–24: $7,390,000

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ATTACHMENT 1: ONE NAVAJO CANCER STORYLibby, a 35 year old woman, is the mother of three young children. One month after giving birth to her third child, Libby came to the Tuba City Emergency Room with abdominal pain. Imaging found a large abdominal mass, and she was immediately transferred to Phoenix, 225 miles away, since there is no capability to perform a biopsy in Tuba City.

Libby was diagnosed with inoperable stomach cancer. The cancer had already spread beyond the stomach to other abdominal organs and was therefore not curable. Once her testing in Phoenix was completed, she came back home to Tuba City and started chemotherapy at Flagstaff Oncology.

In order to participate in chemotherapy, Libby had to quit her job, yet she is as fortunate as a cancer patient from Tuba City can be. She is educated and speaks English. She lives on paved roads and has money for transportation. She has a good family support system with family members who can drive her to treatment.

Our patients spend more time on the road getting to their oncology appointments than they spend getting actual cancer care. To reach the nearest oncology site, many travel much farther than Libby, on unpaved or impassable roads, with a family member who can translate the doctor’s English into Navajo. Most pay for gasoline with food money.

Libby knows that she will die from her cancer. What she has difficulty accepting is that she cannot receive her cancer care closer to her home and her family. Libby wants to be the last Navajo to have to endure such hardship.

One Way Distances Patients on the Navajo & Hopi Reservations Must Travel to Flagstaff, Arizona for Cancer Care

Mileage (one way)

Equivalent Distance from Washington, DC

From Reservation Communities

Shonto, AZ

Kayenta, AZ

Fort Defiance, AZ

Mexican Hat, UT

Red Mesa, AZ

127 miles

150 miles

191 miles

193 miles

205 miles

Philadelphia, PA

Trenton, NJ

Pittsburg, PA

Elizabeth, NJ

New York, NY

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ATTACHMENT 2: TUBA CITY REGIONAL HEALTH CARE CORPORATION CANCER TEAMOur multidisciplinary team members that will make local cancer treatment a reality.

Anabella Aspiras, MPA, RN – Senior Director of Strategic Initiatives at Cancer Support Community, the largest professionally-led national cancer non-profit, where she leads programmatic efforts to ensure cancer support services for patients and families in medically vulnerable populations. Her expertise in healthcare programming, administration, and policy is informed by her frontline experience. Ms. Aspiras has worked as a nurse in medically underserved communities from U.S. inner cities to Sierra Leone, and most recently served as Director for Patient Engagement on Vice President Biden’s Cancer Moonshot Task Force.

Lynette Bonar, RN, BSN, MBA – Chief Executive Officer of Tuba City Regional Health Care Corp. (TCRHCC). Ms. Bonar is a full blooded Navajo and U.S. Army veteran (1982-88), where she served as both Medic and LPN. Ms. Bonar is also a Fellow of the American College of Healthcare Executives. As CEO of TCRHCC, Ms. Bonar oversees a 73 bed hospital, outpatient medical center, 50 specialty clinics, 4 satellite clinics, 3 mobile clinics, and 1 traditional native medicine program. Dedicated to providing 21st Century medical care to the Navajo, Hopi, and San Juan Southern Paiute patients whom she serves—and eliminating health care disparities for all American Indians—Ms. Bonar is a recognized tribal health care pioneer whose expertise is frequently requested by national and international health policy agencies.

Frank Dalichow, MD – With his wife, Dr. Johanna Dimento, is establishing the first oncology program on an Indian reservation at Tuba City, Arizona. After graduating from New York Medical College and completing his residency in internal medicine at Stamford Hospital, Dr. Dalichow worked for 11 years as an Indian Health Service physician at TCRHCC, where he fell in love with northern Arizona and Navajo culture. Dr. Dalichow recently completed a fellowship in Hematology and Oncology at the University of Maryland with the intent to provide oncology care to American Indian people who live in Northern Arizona.

Johanna Di Mento, MD – An oncologist who completed her residency and fellowship in hematology and medical oncology at the University of Arizona during which she accompanied her mentor, Dr. Michael Lobell, to weekly clinics at the Phoenix Indian Medical Center. This experience fostered her desire to provide cancer care to Navajo and Hopi patients in Northern Arizona, which she did for over a decade in a community cancer center off the Navajo reservation. Dr. Di Mento looks forward to delivering that same high level of oncology care on the Navajo Nation.

Barbara Peters – Founding Executive Director of the Navajo Hopi Health Foundation, an organization on the Navajo Nation dedicated to providing “health care first to first Americans.” Ms. Peters is a dedicated member of the Tuba City Regional Health Care Center family whose expertise building medical centers throughout Northern Arizona has helped improve the TCRHCC campus. Ms. Peters’ social entrepreneurship talents have launched many programs at TCRHCC that promote, engage and empower TCRHCC patients and staff alike. Ms. Peters leads the local effort to raise funds for a local oncology program and facility.

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Kim Thiboldeaux – CEO of the Cancer Support Community, where she leads an international effort to advance the idea that psychosocial care is as important as medical care in the face of a cancer diagnosis, and oversees a network of more than 50 local affiliates, more than 100 satellite locations and online at www.cancersupportcommunity.org. Ms. Thiboldeaux serves in numerous leadership roles in the cancer and health care communities including: member of the American College of Surgeons Commission on Cancer, Co-Chair of the Alliance for Quality Psychosocial Care, Cancer Today magazine National Advisory Board Member, and member of the Board of Directors of the Biden Cancer Initiative. Ms. Thiboldeaux is a recognized health policy pioneer and patient advocate who has authored numerous books and hosts an award-winning weekly radio program about living well with cancer.

Brandy Tomhave, JD – An enrolled member of the Choctaw Nation who as a congressional staffer, wrote, shepherded to passage and funding legislation that authorizes the U.S. Department of Justice to assist local communities to divert individuals with mental illness from criminal courts into wrap around care. For the past 16 years, she and her husband, Jeff Tomhave, have been dedicated to improving health care, roads, education, and justice for American Indians. As the Government Affairs Director of The Tomhave Group, Ms. Tomhave is a change agent for her client communities.

Jeff Tomhave, JD – An enrolled member of the Three Affiliated Tribes of the Fort Berthold Reservation who is dedicated to helping tribal communities develop sustainable solutions for some of the most intractable problems in Indian Country. In 2003, he launched The Tomhave Group to work with tribal governments, Congress and federal agencies to improve the delivery of essential services to American Indian reservations. As an author and film maker, Mr. Tomhave uses multi-media platforms to share the realities of Indian Country with decision makers in Washington DC.

Jeff Travers, MBA – Chief Operating Officer of the Cancer Support Community, where he leads the team that manages the organization’s finances, HR, technology and operations. Mr. Travers is a passionate advocate of social justice who previously launched several programmatic, fundraising and messaging initiatives for Fight For Children to help advance the organization’s mission to promote education reform. Mr. Travers is an active volunteer in community-based and civic organizations, currently serving as the Chair of the DC Healthy Youth and Schools Commission, a position to which he was appointed by the Mayor of Washington DC.