“Yes, I want to get tested….”
What to do before your first testing appointment
Rally your support system
Going through the testing process can be an emotionally difficult time for many people. Consider with whom you would share the results, and whether you want to make them aware that you are planning to be tested. Learn about local support groups and what they could offer to you. Reach out to family members, friends, and clergy whom you trust to help you through this trying time.
Work with a Mental Health Professional for Support
Getting tested for HD is a very personal, intense decision. Preparing for the possibilities of being gene positive as well as gene negative can take a toll on a person and your usual reserves of strength and support may be tested. The period of time around genetic testing is a time of ups and downs, when many people experience depression, which may in extreme cases lead to suicide contemplation and attempts around this time; this is another reason that going through a well-regarded testing program that will treat patients with dignity and connect them to supportive resources is the safest way to go. We believe that having a supportive relationship established with a counselor or therapist well before your first testing appointment is ideal. Consider working with a psychologist, licensed clinical social worker, or counselor during this time period. HD Reach can assist you to find competent clinicians who are aware of the challenges of being tested for HD.
Consider Your Work Benefits and Overall Employment Situation
Some people work for companies that offer group health care insurance; this is really optimal for someone with HD because health care premiums will not rise with this type of insurance unless the entire group’s plan is renegotiated. It is a good idea to know all about your available benefits and how they might be impacted by potential genetic test results. Some people may try to stay in their jobs longer if they are close to their 10- year anniversary, as some employers offer medical, dental, vision, and mental health benefits at the current rate as long as a person is disabled after 10 years. Consider purchasing long and short-term disability coverage through your employer if possible. If you are self-employed and pay for your own health insurance, your insurance rates could go up if you use the insurance to cover HD-related medical appointments (“Huntington’s Disease ‘At-Risk’ Preparation Checklist”, Phil Hardt). People need to think about whether they will disclose information on the job to their employers if they should have a positive test result. Though many protections exist for working people with disabilities, there are definitely cases when employment is terminated for “reasons other than health” after information about HD is disclosed. However, there are also many success stories about people with HD who seek out workplace accommodations that allow them to keep their jobs longer as long as performance is not adversely affected. Many national and local resources exist for how to pursue job accommodations; please see our Resources page for more info.
Financial and insurance-related considerations
Please call for more information about these subjects.
Many people think that if they get a gene positive test result that they are then officially diagnosed with HD. The diagnosis of HD is actually made by a neurologist based on the presence of motor symptoms indicating HD in conjunction with a positive test result and/or positive family history of HD. So, you could get a test result that is gene positive, but the neurologist would have to be able to document onset of symptoms in order to diagnose HD.
Many people think that if their genetic test reveals that they carry the HD gene, then this is all that is necessary to include with a SSDI (Disability) application. SSDI will not award Disability benefits based solely on a genetic diagnosis. Please contact HD Reach or HDSA for more information about this and make sure to visit our Resources page.