Privacy Fears Send DNA Tests Underground

biobricks writes "The New York Times is reporting that people who could benefit from genetic testing are too afraid their health insurance companies are going to raise their rates or deny them coverage to find out the health information contained in their own genes. There is a growing "genetic underground" where people pay for their own tests so they won't have to share the results with insurers, and beg doctors not to divulge their genetic status in medical records. A bill that would ban genetic discrimination by insurers and employers — and presumably make people feel safer about taking care of their health — is stalled in the Senate. We've discussed these types of personal DNA tests in the past."

Comments

Re:Making money versus helping people

[NIckGorton]

No. Because no one is subject to random economic events. Yes, people unexpectedly lose their jobs, but anyone who is well prepared won't be subject to significant risk because of that. They will have savings set aside and they understand that they will have the (federally mandated) option to continue their current coverage for up to 18 months if they chose to pay. So, you are working hard at your job, have no consumer debt, own your home, and have $50,000 in savings (much better than most Americans, but lets go for a best case scenario.) Then you get diagnosed with cancer. So you start undergoing treatment, but because of the toll on your health, you have to quit your job. Your EMTALA mandated coverage is $700 a month for you, but you elect to pay it because otherwise you will be unable to receive your treatment. It will take $12,800 of your savings, but that is your first priority.

You begin living as frugally as you can, but the bills keep mounting. Your insurance has a $2,000 deductible per year, then you have to pay 10% of costs up to a maximum out of pocket of $6,000 per year. So the first several months, you pay out $6,000, but then the first of the year hits and you again have to pay $6,000 in the first few months of the next year. So your $50,000 in savings is now down to about $25,000 just with your out of pocket costs and paying 18 months of EMTALA coverage.

The chemo and radiation you receive gives you profound weakness and nausea/vomiting. Unfortunately the inexpensive antiemetics phenergan, compazine, and reglan all give you a severe dystonic reaction. So the only one you can take is zofran, which your insurer refuses to pay for because its non-formulary. You only use it for the worst days after your rounds of chemo and split pills when you can, but its the only thing that will help. Even ordered online at the cheapest Pharmacy you can find they cost $10 a pill. So you end up spending an extra $300 per month for medicine in addition to the $15 per month copay each for your other half a dozen medicines. So your out of pocket drug costs are $400 per month. That plus your bare minimum living expenses (food, utilities, tax on your house, travel to and from the hospital) are about $2000/month. So by the middle of the year, your savings have dwindled to almost nothing.

So you begin borrowing by taking a loan out on your home, this gets you through the end of the year and into the beginning of the next. Unfortunately, as a result of the treatments, you suffered a mild stroke and now have to walk with a walker. So you begin the laborious process of applying for disability. You are initially denied, and hire a lawyer who works on commission, but he tells you it will probably be a year or more before you get disability (and hence medi-medi coverage as well.)

I'm getting tired of writing this, and depressed because its all too common. Over half of people in the US in 2006 who filed for bankruptcy did so because of health care bills. Over half of those were employed and insured when they became ill. Don't fool yourself into believing that you can render yourself immune from this should you lose your health and hence your usefulness to a capitalist society. We discard 'useless people' like yesterdays newspaper. And the only reason it hasn't happened to you is you are still producing.

Re:An ounce of prevention...

[Mr. Slippery]

Consider that the National Association for the Self-Employed...

...is a front for MEGA Life and Health. Though they certainly try to hide it, NASE is not an actual indepentent "association", but the marketing arm of MEGA. Fortunately, the high-pressure sale techniques of the agent I encountered were enough to tip me off that something was wrong, and I Googled before I bought and so learned how bad the "coverage" MEGA provides actually is.

Avoid NASE. It's a scam.

Re:He who pays for the test owns it

[NIckGorton]

The more intelligent solution is to outlaw discrimination based on pre-existing medical conditions (thus destroying the business model of the insurance industry as it exists now in the US, which wouldn't be a bad thing). The point of the medical industry is to cure people. The point of the medical insurance industry is to make the most money possible. They are contradictory goals for which only legislation can facilitate a more rational change. Except that its the 'for profit' part that is the problem, whether its health insurance or health care delivery. For profit providers of health care also have the same problem (like the famously substandard care that is delivered at nursing homes owned by large for profit corporations.) And similarly, non-profit insurers (cough-Kaiser-cough) in the US are way not as evil as for profit ones. I have had several patients (in the sliding scale clinic where I volunteer 2 days a week) who sought individual policies who had pre-existing conditions - while none was offered any plan by BCBS, Aetna, Health Net, et al, Kaiser covered them all - albeit after I had to send a buttload of tests on some of them and one with an exclusion for one type of care. Kaiser is also one of the few insurers who doesn't as policy drop individual members when they become ill. But then they spend most of the money they take in on care, and none goes to profit. If you have to pay out 25% of your money as profits and administration, you gotta pinch pennies somewhere. Pruning the sick and expensive folks is easy and very successful!

Its not rocket science: You can do health care for people or for profit. Not both simultaneously.

Re:An ounce of prevention...

[big_paul76]

The statistic I heard (regrettably I can't find/am too lazy to try and source it now) was that in Canada, of every dollar spend on health 8 cents is administrative costs.

Versus 24 cents of every dollar in the US. And we have better overall healthcare outcomes. (Although to be fair, the US has some pockets of spectacular poverty without an equivalent in Canada, except for Vancouver's DTES, so the health care outcomes comparison is probably apples and oranges.)

So why not just, y'know, by an act of congress, make the government the single-payer for anybody who wants it? We basically did the same thing in the 60's when we brought in medicare, the doctors actually went on strike to try and prevent it, but it's a genuine Good Thing to have.