Genetic Testing and Long-term Insurance: conflict?

[Fc1345linville]

I think this article does a great job of reviewing the likely impact of genetic testing on LTC insurance and those of us who are invested in it or receiving care from it. For those in the APOE4 "family", with no cure yet in sight, the Do-I-Test, and Whom-Do-I-Tell are not getting easier.

https://www.nytimes.com/2017/05/12/heal ... .html?_r=0

[KatieS]

After discovering my E4, I started to complete a LTC application and realized my neuro consultation would have to be disclosed, so I decided to not apply. Now the LTC policies seem to only cover 3 years, not lifetime coverages & the premiums can continue to increase.

[Julie G]

The LTC industry is suffering with burgeoning AD rates and we are "gaming" the system as this article correctly points out. I also applied for LTC after learning of my 4/4 status and was turned down for my connective tissue disorder. With the revelations offered by genetic testing, we're creating a brave new world in which GINA protections are likely to erode.

[circular]

I question the statement in the article that the someone who must pay for future LTC services is either taxpayers or private payers (vis insurance or otherwise). I fear, at least in the US, that there wont be enough of either funding source. Many if not most will quickly descend the monetary ladder, finding government help nonexistent or unacceptable, choosing instead to care for their own and taking a hit to their own earning potential and payments into social security, if that's still around. Cheerful, huh? Please tell me I'm all wrong. You would be shocked at the OOP cost of care, even after paying for a policy, before the ADL or severe cognitive impairment thresholds are even triggered, let alone the elimination period satisfied. This is lose-lose-lose game for government, insurers and aging healthcare consumers. I'm considering starting one of those aging support networks in my neighborhood and surrounding ones. I think it's the creative way out of this LTC financing disaster, Alzheimer's or otherwise, and could also help the disabled or temporarily recovering to feel less isolated and in need.

[SusanJ]

circ, in my little town we have a non-profit called "A Little Help" that gets a small monthly fee (and I mean small) and has a cadre of volunteers who provide a little help with anything, from mowing, driving someone to a doctor to buying food. It's goal is to not only keep people in their homes but keep in touch with others. Hasn't been in operation for long, but it's gaining momentum. A friend of mine (82) uses it to take the burden off her daughter (and friends) to take her places. https://www.alittlehelp.org/locations/chaffee/

[circular]

Susan that's great. I think there will be more and more of these. There are some now with a pretty long track record. I haven't looked yet into whether ther'es a how-tho manual available. Probably the bigger the area the more versatile the potential tasks that can be filled. There has to be some way to ensure security, and I'm not sure if in a large enough area it could be scaled up to even handle what's often the toughest part of the day for an aging person to tackle in the beginning: morning routine. Also medication management. Somehow a family "care coordinator" needs to be able to place requests and get reports back etc. I just think I need to start volunteering in this way and paying it forward before too long.

[SusanJ]

Somehow a family "care coordinator" needs to be able to place requests and get reports back etc.

That's the critical thing when you know you're heading towards some decision point. When we got home care for my dad, when he could still live on his own, they kept a notebook with comments that we could read later, along with formal reports. Helps in making important decisions, looking at meds and the like.

[circular]

Yes, and the thing that begins costing so much, even before insurance kicks in, is the boatload of home care. That's the part that is going to need to start coming from community groups for people who can't afford to self-pay and aren't covered under government programs. I'm not sure neighborhood groups are doing this yet, or if it would even work. A friend and I are considering not downsizing (if possible), so we have extra rooms to rent out for income and/or live-in/exchange help ... assuming we survive our husbands.

[Fc1345linville]

On a personal note, I received this past week a letter from my long term care insurance company, informing me that our (my wife and I) premium is going up 29% for we Virginia residents. The state insurance commissions must first grant the company's request for increase. We've had the policy for 13 years, and this is our first increase. We were offered a variety of benefit reductions to essentially zero out the increase, but we've elected to take it because their offers are hugely tilted to their benefit. I spoke with my financial adviser who said we were lucky, as the New York insurance commission had granted a 50% increase to LTC insurance companies. Another "train wreck" close on the horizon.

I am a volunteer Long Term Care Ombudsman (a national program run by the states and counties) in my area, assigned to an Assisted Living facility that also has a dementia unit. Long Term Care requirements are definitely creating a growth industry, but the costs make it almost inaccessible to 90% of the population. A growing problem in the assisted living facilities is the large number of new residents in assisted living that come in with undiagnosed (or undeclared) mild cognitive impairment and early dementia, but the staff of Certified Nursing Aides (CNAs) have not been properly trained to handle them.

This is a global problem that is only getting worse, as we are unable to find the dollars to fund the research for a cure. If left to Big Pharma, they are incentivized to develop drugs to "treat" the disease, not cure it.

[E4me]

So for a person with E4/E4 who is 60 and in otherwise perfect health, assuming LTC coverage is available, how many years of coverage would be appropriate to get: 3, 4 or 5 yrs? Ideally the more coverage the better and the safer, but its expensive so want to be smart about it. thanks!