- Most clinical trials are done on us rather than other minorities. Actually we are almost never included in clinical trials.
- We are used like guinea pigs. Guinea pigs do not have a choice about taking part in a study, but we do.
- We are the frequent victims of experiments by the US government. This was true, but not likely today.
- We are over-studied with little good going back to the local community.
- What are some explanations Native American leaders have for not participating in studies?
Additional Native American cultural issues
- Cultural issues may affect the recruitment, retention and conduct of a trial
- For example, what if the clinical trial required the patient to have a medical check up every week over a 1 month period of time and the patient lived 200 miles away from the clinic?
- What if that month overlapped with annual tribal ceremony or holiday?
- Such as, Sun Dance or Green Corn ceremonies?
- What if the clinical trial required eating certain nutritious foods daily?
- But the tribal ceremony required several days of fasting?
- What if local tribal cultural practices include taking herbal treatments recommended by the traditional Indian healer?
- But those herbs interfered with the drugs used for cancer treatment?
- Poverty may affect compliance
- 5 a day includes eating five servings of fruits and vegetables a day. This is costly
- Health care standards and quality treatment are decided by these trials
- If Natives are left out of these trials …
- We have no influence on such standards.
Ways clinical trials could be more inclusive of Native Americans
Tribal or Native Health Boards can:
- Rank cancer within the top 5 on the Contracted Health Services list for their tribe.
- Meet with Native American representatives, the National Cancer Institute (NCI), or Cancer. Cooperative Groups to discuss the clinical trials studies for cultural acceptability
- The NCI is a federal agency that does more scientific cancer research than any other organization in the world. It is located in Maryland, USA.
- Cancer Cooperative Groups are groups of healthcare providers who develop clinical trials that are carried out throughout the country.
Tribal / IHS / Urban Indian clinics can:
- Transport the patient and family member to the health care setting providing the clinical trial.
- Provide housing for the patient and family member
- Get help from
- The NACR Survivors Support Network (1-800-537-8295).
- The Native CIRCLE (Mayo Clinic).
- NCIs Cancer Information Service.
- Other organizations (such as the Komen Foundation, Lance Armstrong Foundation).