Preparing for 1st screening / kids

[Boz]

I found an article which is quite interesting with regards to the subject of genetic testing. This was published in 2001 Newsletter (Division of Health Care Finance and Policy / Commonwealth of MA). Link = http://www.mass.gov/dhcfp/pages/dhcf...#new_datapoint Scroll halfway down to GENETIC TESTING: Its Limitations and Promise

Some excerpts:
“…Genomics uncovers a predisposition, not inevitability, and this distinction has tremendous implications for how testing is used and how results are acted upon.”

My children will be screened by shortly. I know that a negative echocardiogram for HCM now does not mean they are clear BUT an additional genetic test might.

“Scientist’s now believe that nine of 10 leading causes of US mortality (injury excluded) will be shown to have some genetic component.”

This is a pretty important statement considering the guilt I will feel should anyone of these kids come up with signs of the disease.

Massachusetts has a new law which bans insurance and employment discrimination based on genetic information.

As crass as it sounds, we are presently trying to hustle up some life insurance policies. As we understand it (posts on these boards) information gathered during this upcoming screening will become a part of their medical records and disqualify them from future insurability. Just because an echo shows evidence of disease now, doesn’t mean they won’t live a long and prosperous life. What if the echos are negative on all three? Will the fact that they have undergone this test be in their record? Will the test itself affect insurability?

[Pam Alexson]

Re: Preparing for 1st screening / kids

Boz,

You raise an interesting question regarding the negative test results and insurability. I too would like to know the answer to that one. My 3 have recently all tested negative,but because of the fact that there is always the chance that this disease can develope later in life , I have wondered how the fact that they were tested could interfer in their future procurement of life insurance. I also wonder if it is discriminatory on the insurance company's part .
I hope someone has the answer or a site with that info. I do not think you are crass trying to at least get them some insurance now. Mine were lucky as i prepared for that when they were small and now the dividends pay the premiums on all three . If there is any dividend left over it buys them extra insurance.
While we are on this subject , it is important for those who are making life insurance payments, car payments , credit card payments,and if you have a morgage, to check and see if there are disability riders on all. So that , if you go on disability these premiums and payments may be paid by the waiver. It is something we tend to ignore in life and wait until something happens. Along with the shock of a diagnosis of HCM financial destitution can be even more then some might be able to face. Also as the bread winner of the family having short and long term disability for nominal amounts of money out of your paycheck each week can be well worth it .
Have you found some of the articles published by The Seidman Group? In the early days of my research before my diagnoisis , I was a scavenger for anything I could find. You will find some interesting articles on the gene studies they have done and replication of the disease in a mouse in the lab. The Seidman group is at Brigham and Womens Hospital in case you did not know.
Take Care , Pam

[Boz]

Re: Preparing for 1st screening / kids

Have you found some of the articles published by The Seidman Group? In the early days of my research before my diagnoisis , I was a scavenger for anything I could find. You will find some interesting articles on the gene studies they have done and replication of the disease in a mouse in the lab.

I am aware of the Seidman Group, but no I have not seen any of their articles. I'd be very interested if you could pass along a link.

I have had a couple of conversations with Dr. Ho. I don't know if she is actually in the Seidman Group, but she does genetic work through the Brigham.

[Burton Borrok]

Re: Preparing for 1st screening / kids

Wow – Boz and Pam,
You both raise some very interesting points about our lives and HCM. Please let me address a few.

First on the list is genetic testing. I believe there is still much investigation going on in regard to genetically identifying HCM. I don’t even think they yet know all the possible markers that can identify this malady, nor many other factors concerning it.

Certainly if a person has the marker(s) that have already been identified, it’s a pretty safe bet that they have, will have, or can pass on this genetic variation, but that’s still only a piece of the puzzle. There is much yet to learn.

Now about insurance. It is a very wise person who takes out a policy on a child that in time becomes ‘paid-up’ or premiums paid from dividends, with the excess buying extra ‘paid-up’ coverage, so the policy grows as the economy grows. Beyond that, policy’s that pay off the mortgage in the event of disability are dirt cheap, and usually do not require a physical to get them. Some have a window of opportunity that must be exercised within a short time period after purchasing the home – but I believe others don’t.

While working, always carry Long Term Disability (a cheap but valuable coverage.) I would also recommend getting a group life insurance coverage from the job, and check into the possibility of switching it to an individual policy in the event of you leaving their employment. These are the cheapest policies I can think of, which generally do not require the passing of physicals, or surrendering medical information. Beyond that it’s searching for a company that will insure you, with your medical conditions. If you do find such a policy, it generally carries a higher premium the a non-risk pool policy.

Insurance companies work based on actuarial tables. They use history to figure out the number of people who will probably make a policy claim from a particular group of people. They then set the premiums based on the amount of money they will have to pay out, plus their profit. After that, the larger the group they can gather the more sure they are of fitting the model, and getting the profits they are in business for. Acquiring groups (like companies) in the overall group lowers their risk even further, and consequently acquiring coverage through your company usually results in lowered premiums.

In a nutshell then, it all depends on which group you fall into, and how many companies actually write policies for that group. (Some companies will classify you in a different group then others – that’s why it pays to shop.)
Burt

[Sarah]

Re: Preparing for 1st screening / kids

GET THE INSURANCE FIRST. As much as you can for as long as you can --life and health.

The laws on genetic info are new and not universal nor have they been tested in court.

Most, if not all, insurance companies have one word in the underwriting handbook for all forms of cardiomyopathy. That word is "decline."

It is just plain smart to preempt the companies by getting as much insurance as you can before you screen the kids. A regular physical never includes an echo, so just don't mention it or ask for it on the insurance physical if needed.

Also, some policies let you add on a rider to allow you to buy more insurance later without proving good health (Northwestern Mutual offers this, I know) and I would definitely try and get hooked up with that.

take care,

S

[Pam Alexson]

Re: Preparing for 1st screening / kids

Boz ,
When you first open the site here and enter via the heart beat the next page has a listing of content. Click on links. You will see the Seidman group there. You can navigate around and find some stuff but I kind of like to walk in the front door of places so i just went to:

www.hhmi.org/news/seidman2.html

This is the Howard Hughes Medical Institute. You will go right to the bio's and such on the Seidmans. As you can get through a lot of the medical language you will begin to unravel some things. When I first started out , even with my medical background I would often read and re- read some of these articles before i could make some sense of understanding out of them. I think too it was a time of overwhelm and isolation in what i was discovering and not sharing with people around me. It was a time for shielding all my loved ones until I knew what was happening. Until i knew what i should do and where i should go to have the medical profession confirm my own diagnosis. It was a lot of reading and shrieking at the computer as i found every trail led me to the same words over and over:HYPERTROPHIC CARDIOMYOPATHY. I stared at those words some nights for hours in disbelief and yet I knew. The best day began when I first clicked on the HCMA web site.
Good luck and let us know if you need help.
Pam