NYT - Insurance Fears Lead Many to Shun DNA Tests

[Guest guest]

I saw this and I can't help but ask the question.

Is genetic testing as promoted for biotoxin illness incompatible with

our having a for-profit health insurance system? Do people have

problems?

--------

http://www.nytimes.com/2008/02/24/health/24dna.html

February 24, 2008

The DNA Age

Insurance Fears Lead Many to Shun DNA Tests

By AMY HARMON

Grove wanted to find out if she was destined to develop the

form of emphysema that ran in her family, but she did not want to ask

her doctor for the DNA test that would tell her.

She worried that she might not be able to get health insurance, or

even a job, if a genetic predisposition showed up in her medical

records, especially since treatment for the condition, alpha-1

antitrypsin deficiency, could cost over $100,000 a year. Instead, Ms.

Grove sought out a service that sent a test kit to her home and

returned the results directly to her.

Nor did she tell her doctor when the test revealed that she was

virtually certain to get it. Knowing that she could sustain permanent

lung damage without immediate treatment for her bouts of pneumonia,

she made sure to visit her clinic at the first sign of infection.

But then came the day when the nurse who listened to her lungs decided

she just had a cold. Ms. Grove begged for a chest X-ray. The nurse did

not think it was necessary.

" It was just an ongoing battle with myself, " recalled Ms. Grove, of

Woodbury, Minn. " Should I tell them now or wait till I'm sicker? "

The first, much-anticipated benefits of personalized medicine are

being lost or diluted for many Americans who are too afraid that

genetic information may be used against them to take advantage of its

growing availability.

In some cases, doctors say, patients who could make more informed

health care decisions if they learned whether they had inherited an

elevated risk of diseases like breast and colon cancer refuse to do so

because of the potentially dire economic consequences.

Others enter a kind of genetic underground, spending hundreds or

thousands of dollars of their own money for DNA tests that an insurer

would otherwise cover, so as to avoid scrutiny. Those who do find out

they are likely or certain to develop a particular genetic condition

often beg doctors not to mention it in their records.

Some, like Ms. Grove, try to manage their own care without confiding

in medical professionals. And even doctors who recommend DNA testing

to their patients warn them that they could face genetic

discrimination from employers or insurers.

Such discrimination appears to be rare; even proponents of federal

legislation that would outlaw it can cite few examples of it. But

thousands of people accustomed to a health insurance system in which

known risks carry financial penalties are drawing their own

conclusions about how a genetic predisposition to disease is likely to

be regarded.

As a result, the ability to more effectively prevent and treat genetic

disease is faltering even as the means to identify risks people are

born with are improving.

" It's pretty clear that the public is afraid of taking advantage of

genetic testing, " said Dr. Francis S. , director of the

National Human Genome Research Institute at the National Institutes of

Health. " If that continues, the future of medicine that we would all

like to see happen stands the chance of being dead on arrival. "

Caught in a Bind

For Ms. Grove, 59, keeping her genetic condition secret finally became

impossible. When her symptoms worsened she was told to come back to

the clinic before antibiotics would be prescribed. But there had been

a snowstorm that day, and she could not summon the strength to drive.

" I have alpha-1, " she remembers sobbing into the phone. " I need this

antibiotic! "

The clinic called in the prescription.

Ms. Grove, who does freelance accounting from home and has health

insurance through her husband's employer, allowed herself to be

identified here because she said she felt an obligation to others —

including some in her own family — to draw attention to the bind she

sees herself in.

" Something needs to be done so that you cannot be discriminated

against when you know about these things, " she said. " Otherwise you

are sicker, your life is shorter and you're not doing what you need to

protect yourself. "

Employers say discrimination is already prohibited in the workplace by

the Americans with Disabilities Act and existing laws governing

privacy of medical records. But employee rights advocates say nothing

in those laws explicitly prevents employers hard-pressed to pay for

mounting health care costs from trying to screen out employees they

know are more likely to get sick.

Courts have yet to rule on the subject. When the Equal Employment

Opportunities Commission sued the Burlington Northern Santa Fe Railway

for secretly testing the blood of employees who had filed compensation

claims for carpal-tunnel syndrome in an effort to discover a genetic

cause for the symptoms, the case was settled out of court in 2002.

And in 2005 when Eddy Curry, then the center for the Chicago Bulls,

refused a genetic test to learn if he was predisposed to a heart

ailment, the team traded him to the New York Knicks.

Insurers say they do not ask prospective customers about genetic test

results, or require testing. " It's an anecdotal fear, " said Mohit M.

Ghose, a spokesman for America's Health Insurance Plans, whose members

provide benefits for 200 million Americans. " Our industry is not

interested in any way, shape or form in discriminating based on a

genetic marker. "

Still, a recent study by the town University Health Policy

Institute found otherwise. In 7 of 92 underwriting decisions,

insurance providers evaluating hypothetical applicants said they would

deny coverage, charge more for premiums or exclude certain conditions

from coverage based on genetic test results.

The Medical Cost

Regardless of whether discrimination actually occurs, many health care

professionals say the pervasive anxiety over it demands legislative

action. Geneticists complain that discrimination fears prevent them

from recruiting research participants, delaying cures and treatments

for disease. At Memorial Sloan-Kettering Cancer Center in New York,

the same concern is a leading reason people cancel appointments for

tests that detect cancer risk.

" We are dealing with potential lifesaving interventions, " said Dr.

Offit, chief of the center's clinical genetics service. " It's

a tragedy that people are being scared off by this. "

The Genetic Information Nondiscrimination Act, which passed the House

of Representatives by a wide margin last year, would prohibit insurers

from using genetic information to deny benefits or raise premiums for

both group and individual policies. (It is already illegal to exclude

individuals from a group plan because of their genetic profile.) The

bill would also bar employers from collecting genetic information or

using it to make decisions about hiring, firing or compensation. But

it has yet to reach the Senate floor.

Meanwhile, a $300 genetic test for prostate cancer risk announced last

month immediately drew callers to a public radio station in Washington

that was discussing the test, voicing fears of insurance

discrimination. Dr. Karim Kader, who made the test possible with his

discovery that men who carry certain DNA variants are four to five

times likelier to develop prostate cancer, assured one caller that the

test would be " very private. "

For some, that is not good enough.

Vahdat, director of the breast cancer research program at

NewYork-Presbyterian Hospital/Weill Cornell Medical Center, estimates

that 20 percent of her patients choose to pay for the DNA test for

inherited breast cancer risk with cash, to avoid submitting insurance

claims.

And last year, hundreds of customers paid the start-up company DNA

Direct for tests that range in cost from $175 to $3,456 to ensure that

no third party, not even a doctor, had access to their results. ,

a freelance camera assistant in Brooklyn, for instance, sent a swab of

her cheek cells to DNA Direct to find out if her extreme fatigue was

caused by hemochromatosis, a genetic condition in which the body

retains too much iron.

" I would rather not lay out the $200 myself, " said , who requested

that her last name be withheld for the same reason she paid for her

own test. " But it seemed safer. "

Treatment for hemochromatosis typically involves removing a unit of

blood twice-weekly by phlebotomy. But that would mean disclosing the

condition to a doctor, so is planning on becoming a frequent

blood donor.

Kathy, a financial analyst in Houston who would like to know if she,

like her two sisters, has a genetic predisposition to breast cancer,

said she was not going to take even an anonymous test. " Then, " she

said, " I'm just in a position of having to lie. "

The culture of secrecy around genetic information is stronger in the

United States, some experts say, than in countries where people are

guaranteed health care. Among Americans at risk for Huntington's

disease, an incurable brain disorder, only 5 percent take the DNA test

to determine if they will develop it, compared with 20 percent of

Canadians in the same position, according to R. Hayden, a

professor of human genetics at the University of British Columbia in

Vancouver.

Here, doctors often feel obligated to inform patients of the potential

financial downside.

" I always warn them, " said Dr. Moll, director of the

Thrombophilia Program at the University of North Carolina, who uses a

genetic test to determine the best treatment for patients with blood

clots. " Especially if they are self-employed, I don't want it to be a

surprise if their health insurance premium goes up. "

Unknown Risks

After receiving a similar warning from her doctor,

's parents did not allow her to be tested for Factor V Leiden,

a genetic condition she might have inherited from her father that

increases the risk of blood clots.

But last year, with nothing in Ms. 's record to indicate

reason for concern, a gynecologist prescribed a birth control pill to

regulate her uneven periods. Six weeks later, Ms. , then 16,

developed a clot that stretched from her knee to her abdomen. The

pill, combined with the gene she had indeed inherited, had increased

her clotting risk by 30-fold.

Now largely recovered, her primary concern is whether she will be

viewed as a health insurance liability for the future.

" I don't want to have to work for a big business just to get

insurance, " she said. " This could be determining what I can do for my

whole life. "

For Judith Berman Carlisle, the price of privacy was forgoing the DNA

test that would have convinced her not to have surgery. Ms. Carlisle,

48, who was setting up her own therapy practice, was afraid testing

positive for the high-risk breast and ovarian cancer gene that runs in

her family would prevent her from buying health insurance.

But her sister had developed ovarian cancer the year before, an aunt

had died of it, and Ms. Carlisle was desperate not to get it herself.

Her doctor agreed to remove her ovaries based on her family history —

the way such decisions were commonly made before a genetic test was

available.

Ms. Carlisle was convinced the surgery would be less damning than

proof that she carried a defective BRCA1 gene, which also confers a

very high chance of developing breast cancer.

" There's a big difference between someone saying, 'I have a strong

family history,' " Ms. Carlisle said, " and saying, 'I only have a 13

percent chance of not getting breast cancer during the time you're

insuring me.' "

Last fall, after the surgery to remove her ovaries, she began to

consider a double mastectomy to remove any chance of breast cancer,

the disease her grandmother and another aunt had died of. Having

secured health insurance, she took the test for the BRCA1 mutation. It

came back negative.

" The first thing they said to me, " Ms. Carlisle said, " is that I have

no higher risk than anyone on the street. "

[Guest guest]

I have to admit that I am one of these people with a genetic mutation

that causes breast cancer but also makes me high risk for other

cancers as well. For me the decision to go ahead with the test came

from a need to know. I would have obsessed about it if I didn't find

out. My sister found out she had it after she found out she had

breast cancer at the age of 34.

I had only known I had this mutation for two months when I went for

my annual MRI. Because I went at the wrong time of my cycle it was

noted that I had significant changes and a biopsy was recommended

(women don't go before your menses). During the ultrasound the

doctor who invented the mammotome said I'm 99% sure you don't have

cancer but because you are so high risk I'm going to do the biopsy

anyway. This is when my nightmare began as I started to get flu like

symptoms that progressed and progressed. He put a marker in my

breast made partially from nickel which I am highly allergic to. I

still believe the nickel played a role in me getting so sick. I

think it altered my immune system allowing mold to grow in my

breast. I started having memory problems and the rest is history.

My point is if doctors find out you have a genetic mutation for

breast cancer and you have good insurance you will be subjected to

defensive medicine. I am very sad that the doctor did not say I

don't think you need a biopsy but he was so impressed with his

invention that he wanted to do as many of these mammotomes as he

could. Now I am totally disabled and susceptible to mold. My family

has suffered and I am financially broke. I can't sue because the

statute of limitation has run out. In this state it's two years

period and even though I didn't find out about it until 4 1/2 years

after the marker was put in my breast I still can't sue.

In any case, my oncologist wants me to get a prophylactic ooverectomy

and my OB/GYN says a total hysterectomy as well. I'm pretty sure if

I don't agree he will drop me as a patient.

--- In , LiveSimply <quackadillian@...>

wrote:

>

> I saw this and I can't help but ask the question.

>

> Is genetic testing as promoted for biotoxin illness incompatible

with

> our having a for-profit health insurance system? Do people have

> problems?

>

> --------

> http://www.nytimes.com/2008/02/24/health/24dna.html

>

> February 24, 2008

> The DNA Age

> Insurance Fears Lead Many to Shun DNA Tests

> By AMY HARMON

>