Sometimes having Huntington’s disease can change how you approach your employment, access to insurance, as well as superannuation. Therefore this information is relevant to you if you are currently working and have a diagnosis of Huntington’s disease, or if you are at risk of Huntington’s disease and are considering genetic testing.


Should I tell, or do I need to tell my workplace about Huntington’s disease are both very good questions?

To put it simply, If your symptoms have no impact on your ability to fulfil your role and don’t place you or others at risk, then by law you have no obligation to tell your employer.

However, if you do decide to tell your workplace about your HD, there are laws in place to protect you from discrimination. These laws mean that your employer is not allowed to treat you differently, overlook you for a promotion, or refuse your training.

With this in mind, here are some reasons why you may choose to tell:

  1. Your symptoms are now making it difficult to complete your role.
    • By discussing your concerns you may be able to access the support you need to assist you to maintain your employment. This could include options for part-time work, roles with different duties, flexible hours or working from home for example.
  2. Your symptoms may place you or others at risk of injury or harm.
    • Everyone is entitled to a safe work environment. If the symptoms of HD are now placing you or others at risk, talk to your workplace about what can be done from an Occupational Health and Safety perspective to help eliminate or reduce these risks.
  3. Creating some awareness and knowledge about HD can also lead to understanding, empathy and create a positive cultural change towards diversity
  4. Minimise the risk of discrimination, due to a misunderstanding of the disease
  5. You are protecting your rights if in the future you feel you are being unfairly treated and being discriminated against.

When you may choose not to tell:

  1. The symptoms of your HD is not currently having any impact on your role/job
  2. You are considered at risk or gene positive and therefore you legally do not need to disclose your genetic information

Peter- Case Study

Peter is 37 years old and recently diagnosed with Huntington’s disease. Peter works full time in retail with his main duties being customer service, handling of payments and returns, overseeing stock, and product knowledge. Peter’s symptoms currently include some mild involuntary movements of his hands and some slight memory changes. Peter is still able to fulfill his duties to a high standard and his symptoms have not yet shown to impact on his ability to communicate with his customers and provide them with information about the stores products. Peters’ symptoms have also not impacted on his ability to maintain stock levels and complete inventories. To help overcome the slight memory changes, Peter writes himself a list of all tasks to be completed for the day so he does not forget any. As Peter’s Huntington’s disease has not impacted on his ability to complete his role and there are no identified risk issues, Peter at this point does not need to inform his employer about his diagnosis.

Julie - Case Study

Julie is 44yrs old and was diagnosed with HD approximately 3 years ago. Julie works as a midwife at a local hospital. Her duties include administering medication, monitoring patient wellbeing (blood pressure, body temperature etc), assisting and educating new mothers on feeding, bathing, and settling babies. Julie’s symptoms have advanced and she is now having greater difficulty with her balance and coordination (stumbles), she has also started to drop things more regularly like pens, and medication. There have also been some changes in her thinking and she has become a bit more disorganised in her approach to the tasks she needs to do whilst working. Julie has noted that crying babies seem to be upsetting and annoying her. Julie on a couple of occasions has forgotten to check on her patients, and expressed her disapproval at a new mother who was having trouble settling her baby. Some of Julie’s colleagues have noticed these changes and are concerned for her and for the wellbeing of the patients she is caring for. Julie is unsure if she needs to disclose her HD to employer? Julie’s symptoms are now impacting on her ability to fulfil her duties as a midwife and are placing those she cares for at risk. Julie would now be expected to discuss her diagnosis with her employer to ensure the supports can be put in place to minimise any risk to her patients.


Insurance is a concept that most people are familiar with, particularly if it is in relation to private health insurance. However, when it comes to planning for your future and considering insurance that will protect you or your family in the event of an injury, disability, illness or death it becomes a little more complicated.

The reason why this becomes more complicated is that this type of insurance is risk-rated. What this means is that they will want to calculate the likelihood of giving you or your loved ones a payout prior to determining your eligibility. They do this based on a person’s family medical history, your current medical history as well as any known genetic information.

Therefore if you have a family history of HD or any other genetic illnesses, then some insurers may decide not to provide you with insurance coverage. Or if they do they may charge you higher premiums. As part of your application, you will be asked about your family medical history which you are required to disclose. Withholding information could lead to a breach in contract. However, as life insurance policies are ‘guaranteed renewable’ if you are at-risk of HD and later undergo genetic testing and receive a gene positive result an insurer cannot cancel or increase your policy premiums based on new information.

Alternatively, if you decide to go through genetic testing and you receive a gene negative result, you may wish to contact your insurer as your risk of HD will now be no different to those without a family history of HD.

However, before you dive head first into life insurance, explore the options you may already have through your superannuation.

At the end of the day, it is important to read the fine print of all insurances before signing on the dotted line.


If you have been employed then most likely you have joined a superannuation fund. Whilst this fund is there to help you prepare for retirement, there are often other benefits attached that many people are unaware of. These include both life insurance and total and permanent disability insurance.   Not all superannuation funds provide one or both, however, it is often worth exploring what you may already have before applying for something new.

There are also times when it may be appropriate to apply for early access to your superannuation, for example, due to temporary or permanent incapacity. To access your superannuation on these grounds you need to demonstrate that due to your condition you are unable to continue working in a job that you are qualified to perform by education, training or experience and you will require the support of two medical practitioners.

For further information relating to superannuation or any other insurance coverage please seek advice from a financial advisor or alternatively visit the Australian Tax Office (ATO).

If you are interested in meeting with a financial advisor at the office of Huntington’s Victoria to discuss your insurance, superannuation or other financial matters, please contact us to discuss this further.