AYA Initiative: Has it Made a Difference?

Brandon Hayes-LattinSeptember 12, 2013

AYA ONCOLOGY

• Different Cancers• Different Outcomes• Different Biology• Different Therapy• Different practical issues: Fertility

• AYA Initiative: Making a Difference

EPIDEMIOLOGY

ADOLESCENT AND YOUNG ADULT (AYA) ONCOLOGY

• Cancer diagnosed among 15-39 year-olds– ~70,000 per year– Leading natural cause of death

• In contrast to younger and older cancer patients, survival rates for young adults have not increased since 1975– Unique biology– Health services

Cancer Prevalence by Age Group

http://seer.cancer.gov/publications/aya/

US Incidence, Age 15-39, 2003-2007

25%

7%

17%6%

9%

11%

5%

11%

9%

Males

GULeukemiaLymphomaCNSSarcomaSkinThyroidGIBreastOther

16% 3%

8%

3%

4%

12%17%

6%

25%

6%

Females

SEER AYA Monograph, 2006

Clemmesen’s Hook

Clemmesen’s Hook

Hodgkin Lymphoma

Hodgkin Lymphoma

Melanoma

BRAF Mutations and Age

SURVIVAL

SARCOMA SURVIVAL GAP

SEER Monograph 2006

BRAIN TUMOR SURVIVAL GAP

SEER Monograph 2006

BREAST CANCER

SEER Monograph 2006

BIOLOGIC DISTINCTIVENESS

Leukemia Survival

SEER AYA Monograph, 2006

Incidence of Leukemia by Type

SEER AYA Monograph, 2006

ALL Survival

SEER AYA Monograph, 2006

AML Survival

SEER AYA Monograph, 2006

NCI WORKSHOP

• Breast Cancer– Increased “triple negative”– Basal-like tumors associated with increased

proliferation: p16, Ki-67– Increased COX2 expression– Varied gene expression profiles– Differences in stromal milieu

NCI WORKSHOP

• Colorectal Cancer– greater frequency of mucinous histology and

signet ring cells– high microsatellite instability– mutations of mis-match repair genes (40-44)– lower frequency of K-ras mutations, 17p LOH and

18q LOH– lower p53 protein levels– Genetic susceptibility syndromes: Familial

adenomatous polyposis, Lynch Syndrome

THERAPY

SURVIVAL: PEDIATRIC VS. ADULT REGIMENS

Stock BLOOD 2008, pre-published online

EWINGS SARCOMA: EFS

Paulussen ASCO Educ Session 2004

ASCO Fertility Recommendations• Informed consent

– Possibility of infertility– Discuss options or refer

• Standard practice– Sperm cryopreservation– Embryo cryopreservation

JCO 2006; 24:1-14

Barriers to Access• Lack of coverage for fertility preservation• Insurance coverage for standard fertility

treatments not applicable– 16 States have infertility insurance mandates– None include coverage for fertility preservation

• Small timeframe to preserve fertility• Payment model

– Advanced payment required for treatments

Considerations• Iatrogenic condition• Benefit already exists

– Radiation shielding, surgical techniques• Low usage: 0.0067%• Low cost: $0.03 per member per month• Potential savings: accepting adjuvant

chemotherapy• Benefits: decreased stress, improved QOL,

improved decision-making

Institute of Medicine(policy)

• National Cancer Policy Forum/LIVESTRONG Workshop on Addressing the Needs of Adolescents and Young Adults with Cancer, July 15-16, 2013

• This workshop will identify gaps and challenges in caring for AYA patients with cancer, and discuss potential strategies and actions to guide stakeholders as they continue their work to improve the quality of care for this population

NCI AYA Working Group(science)

• Next Steps for AYA Oncology: A Scientific Update, September 15-16, 2013– The purpose of this meeting is to update the science of

AYA oncology to help with NCI strategic planning, scientific gap areas, and potential funding opportunity development.

– Epidemiology– Biology– Clinical Trials– Health Services– HRQOL/Symptom Management

NCI PRG Recommendations

1. Identify the characteristics that distinguish the unique cancer burden in the AYAO patient.

2. Provide education, training, and communication to improve awareness, prevention, access, and quality cancer care for AYAs.

3. Create the tools to study the AYA cancer problem.4. Ensure excellence in service delivery across the

cancer control continuum.5. Strengthen and promote advocacy and support of the

AYA cancer patient.

1. Distinguishing Characteristics

• Elucidate unique biologic characteristics of AYA cancers and AYA patients that affect disease outcome in this population.

• Elucidate AYA life stage/developmental characteristics that influence care-seeking, adherence to treatment, and medical and psychosocial outcomes.

• Identify and ameliorate health disparities experienced by AYA cancer patients and survivors.

1. Distinguishing Characteristics

• Disease-specific retrospective analyses– Osteosarcoma, colorectal cancer, ALL, breast

cancer, testicular cancer, thyroid cancer• NCI Biology Workshop (Tricoli, J NCI 2011)• Health-related QOL (Smith, JCO 2013)• Epidemiology (Johnson, JAMA 2013)• Toxicity (Gupta, Cancer 2012)• Distress (Kwak, JCO 2013)

2. Education, Training, and Communication

• Raise awareness of AYA cancer issues as a first step toward increasing national focus and resource allocation to address the AYA cancer problem.

• Provide targeted education to patients, families/caregivers, and the public about AYA cancer issues.

• Educate multidisciplinary providers who work with AYAs to improve referrals and services to this population.

2. Education, Training, and Communication

• ASCO: Focus Under Forty• Nurse Oncology Education Program (NOEP): At

The Crossroads• Adolescent and Young Adult Oncology Training

for Health Professionals: A Position Statement (Hayes-Lattin, JCO 2010)

• National Young Adult Cancer Awareness Week

3. Tools

• Create a large prospective database of AYA cancer patients to facilitate research on this age group.

• Increase the number of annotated specimens to support research progress.

• Create/modify needed assessment tools specific to AYA cancer issues.

• Improve grant coding and search term standardization to enable evaluation of research efforts and progress.

• Expand clinical trials for AYAs to increase treatment choices and accelerate treatment advances.

3. Tools

• Age-eligibility efforts• ALL study: CALGB, SWOG, ECOG 10403• AYA Cohort feasibility• PubMed AYA Cancer hits

– 2002: 210– 2012: 5232

4. Service Delivery

• Develop, evaluate, and disseminate standards of care for AYA cancer patients and survivors to improve outcomes.

• Establish a national network or coalition of providers and advocates seeking to achieve a standard of excellence in AYA cancer care.

4. Service Delivery

• LIVESTRONG Young Adult Alliance/Critical Mass

• Fertile Hope Centers of Excellence• Quality cancer care for adolescents and young

adults: a position statement (Zebrack, JCO 2010)

• NCCN AYA Guidelines

5. Advocacy and Support

• Address the subjective experience of AYA patients.

• Build the capacity of existing resources to address AYA psychosocial needs.

• Evaluate existing programs and develop new interventions.

5. Advocacy and Support

• Critical Mass Annual Meeting– Alliance membership 350

• International Charter of Rights for Young People with Cancer (http://cancercharter.org)

Future Efforts

• Coordination– Critical Mass

• National Clinical Trials Network– COG and SWOG AYA Committees

• Research Priorities– NCI Workshop

• Units– Teenage Cancer America

• Recognition– Change It Back Center of Excellence