I am the family member of an at-risk individual. I am not at-risk myself.

I have been reading through posts here for several weeks. Thank you all for all that you have shared- I have learned a lot, though I know I have a lot more to learn.

One thing that I have learned is the importance to secure insurance prior to testing. This is something I have offered to look into for my family member, so I have some questions for those of you who have travelled this road.

Life Insurance

I have seen so many comments about obtaining life insurance before testing, however I am confused as to how an at-risk individual obtains life insurance since there is a family history of HD. I pulled my own life insurance paperwork and saw that I was asked about my parents (how old and do they currently have any diagnosed health conditions) and I was asked a question that basically amounted to "is there anything else pertinent to you health that you have not disclosed". Both of these questions would seem to necessitate disclosing the health status of a pHD parent- revealing the applicant's 50/50 risk.

For those of you who did obtain life insurance prior to testing, how did you handle this? Which company did you obtain your life insurance from? Are there specific companies that will not ask these questions? Would you be willing to share which ones? How di you handle the forms and in person questions?

Also, my family member has life insurance through their employer, but as I understand it this would only apply if the person passed while an employee- something that is not likely if this person develops HD as they would have left the workforce as the condition progressed.


Long Term Disability

My family member has already obtained LTD insurance through their employer, so I am guessing that they will have to remain with this employer for as many years as they work in order to keep this benefit- meaning no changing companies and no getting fired/let go or they would lose this benefit? If for any reason they started with a new company after testing positive, would they be able to obtain LTD insurance through a new employer now that they had an actual diagnosis? Or would they be required to disclose this?

Thank you in advance for you replies. I am sure I will have many more questions, but right now I am trying to be helpful in looking into these issues.

Check the LTD and Life policies to see if you can bring it with you if you terminate employment. They might be able to keep both policies in place with no questions asked. The premium would be paid out of pocket directly instead of payroll deduction.

P

One thing to remember is that any policies that are purchased before testing can be easily cancelled if they test negative. That's what I did. I did test positive, but my personal situation is different from most.

Will

Very interesting question.... I currently have life insurance and LTD through my employer. I am now officially 50% at risk since my Dad tested positive a couple weeks ago. I now wonder if I should look into getting a different life insurance plan in case I do test positive assuming I will lose the coverage I have if I am unable to work down the road. Also wondering about my children as I have them covered through my employer... I wonder how this will affect them getting coverage? I have not been tested yet but plan to probably within the next few years. I also currently have insurance through my employer.

I know that if Howard is around, he usually has good advice and ideas on insurance. I have heard that employer insurance is easier to get than other insurance, and from what I've learned here, it seems that employee disability coverage is the best thing to have. I know it's nice to have life insurance too, but disability and medical coverage will go a long way with hd. I would look into what someone else said, that sometimes coverage can be transferred from job to job. But more important, if a person has hd now, they do not want to lose their coverage by getting fired for no longer being able to do their job as well as they used to. And sometimes a person with hd does get fired, because sometimes someone with hd doesn't realize they're not doing their job well. I've seen this happen. If someone has a job with good benefits, they need to, when they become symptomatic, take a sick leave from work, and during that sick leave time, get permanent sick leave from their neurologist. And then when they have that in place, that's when they leave the job. I have hd, I know it's humiliating to not be able to work any more, but which is worse, a persons self esteem, or having a good financial plan for the loved ones that will have to take care of you. People with hd also need to look at this as not humiliating, but liberating, to now have time to enjoy early retirement. But I've seen people get fired too many times, because they of course love their job, but then the worst happens. Another thing I read on here a long time ago, if you have hd in the family, get all the young children in the family a gerber life insurance plan. There are no questions and no approval process. It's not a large amount, but when they become an adult, they can transfer that plan over to any other insurance company, and because already approved with gerber, there are still no questions asked, and as an adult they can then up the amount as much as they want. Hope this helps with some of the questions.



Edited 1 time(s). Last edit at 08/25/2015 05:10PM by Barb.

Thank you all for your responses. I have been traveling for work and haven't had the opportunity to respond.

I'm trying to think of a way for this family member to inquire at work about the LTD and Life Insurance Policies without arousing any suspicions (maybe I'm overthinking that, though? It seems like from what I have read there is so much secrecy required around this disease in order to protect those affected).

I'm still interested to here from anyone who obtained life insurance outside of work as an at-risk individual (since I feel like the whole family history thing is so tough to avoid). I also, of course, do not want this family member and their spouse to pay for life insurance for 20 years and then be denied the payout due to family history.