Obstacles to Clinical Trials
There are many reasons to participate in a clinical trial; sometimes there are obstacles. These obstacles can be overcome with education on your options and availability of resources. Lack of communication between your doctor and you could cause you to be excluded from participation in a clinical trial. The doctor may perceive a lack of interest or there is not an appropriate trial available. In addition insurance may not pay the cost of a trial.7
A lack of information regarding patient rights, accessibility, and choices to not participate can be an obstacle. A clinical trial may not be available locally requiring the patient to consider a trial some distance from their home. The need to travel a distance to obtain care creates an obstacle due to the inability to afford the cost of transportation to get to the trial. Transportation resources are located in the Resource Appendix at the end of this guide. Many hospitals or treatment facilities
offer assistance to help with theses costs. Some programs assist with lodging and meals free of charge or provide affordable rates. Many hotels offer a medical rate that is more affordable than the standard rate for lodging. Be sure to inquire at the treating facility for a list of local resources.
Another huge obstacle for potential participants is a loss of income, not only due to their illness, but sometimes their caregiver's loss of income. A spouse, child, or other significant other may become a caregiver and need to stay with the patient to provide support during the trial. This can be a challenge depending on the type of study and how often the patient needs to be seen. The patient or caregiver has options available with their employer. Discuss these options with your Human Resources Department regarding Short Term Disability (STD) or Long Term Disability (LTD), Family Medical Leave Act (FMLA), availability of sick pool donations, and/or altered work schedules. If you will not be able to work for at least one year due to treatment and recovery they should apply for Social Security Disability Income (SSDI) or Social Security Income (SSI).
The Social Security Administration (SSA) website, www.socialsecurity.gov can provide very useful information on this process. The SSA has developed a list of "compassionate allowances", or diagnoses, that will receive approval for disability.
The compassionate allowances website at:
http://www.ssa.gov/compassionateallowances/conditions.htm will provide you with a list of diagnoses.
Fear of the unknown can be an obstacle. A patient may feel that they are an experiment or a "guinea pig" or they will experience unpleasant side effects from the treatment. There can be unexpected side effects that were not anticipated and participants may need to make more trips for follow-up and testing that can add to expenses from increased lost time from their job and increased fuel costs.
Child care costs also may be a factor. Hiring of private sitters or increased time in a day care add to these costs. Child care resources are located in the Resource Appendix at the end of this guide.
As discussed in Chapter 6, some health insurances and managed care providers do not cover all patient costs in a trial and this can cause unnecessary additional stress to your illness. You can contact your insurance company to find out what costs will be covered before the study begins.
Even though there are challenges when considering treatment in a clinical trial, there are numerous resources and options available to aide in the decision to participate. Do not let these challenges prevent you from considering all options. Clinical trials can offer life saving treatments for your disease and allow you to be a part of breakthrough technology, treatments and cures for your disease.
7Questions to Ask about a Clinical Trial, University of Texas M.D. Anderson Cancer Center. Retrieved 2/28/2009 from http://www.mdanderson.org/patients_
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