WASHINGTON _ Legislation to bar health insurers from usinggenetic information as the basis for denying coverage to patients isnow indirectly under attack from the Health Insurance Association ofAmerica (HIAA), according to Rep. Joseph Kennedy II (D-Mass.).The so-called genetic "nondiscrimination" language appears in healthinsurance reform bills passed by both the House and Senate in recentweeks.
Late last week Kennedy released what his office called "internaldocuments" from HIAA that appear to be a detailed analysis of theSenate bill prepared by the lobbying group. The document states thatHIAA should support the "nondiscrimination" provision but work tomodify the language so that insurers are still free to engage in"legitimate benefit design or utilization" and "cost managementpractices [including benefit limitations]." Kennedy claims that, whilegenetic information and other health factors could not be used todeny coverage, they might be used to "design" coverage.
Both the House and Senate bills contain a provision which states thatinsurers may not exclude beneficiaries from being _ or continuing tobe _ enrolled as a participant or beneficiary in medical plans basedon health status. "Health status" has multiple definitions in both bills,including a patient's medical history, claims experience, geneticinformation, or disability. Biotechnology companies were amongthose lobbying specifically for inclusion of the phrase "geneticinformation."
"The insurance companies seek a world where they can use geneticinformation to deny anyone coverage," charged Kennedy in a pressrelease. "This strategy document exposes the insurance industry'strue motives."
HIAA has denied Kennedy's charges, claiming that the document inquestion, titled "HIAA Policy Development and Research," waswidely distributed both on and off Capitol Hill. In a May 9, 1996,letter, HIAA's vice president of federal affairs, Laura Thevenot,called Kennedy's statements "completely without basis, inflammatoryand just plain wrong."
HIAA spokesman Richard Coorsh told BioWorld Today the languageclarification sought by HIAA is to ensure the bill is notmisinterpreted to require group health plans to provide benefits thatwould otherwise be unavailable under a given plan. "The issue in theSenate bill has to do with the group health insurance marketplace andthe modification we would like to see simply pertains to a possibleinterpretation problem and has nothing to do with the use of geneticinformation," he said.
Biotechnology companies and patient advocacy groups lobbiedlawmakers to include language barring genetic discriminationbecause many see it as a necessary precondition for the widespreaduse of genetic testing.
Sneaking In Through The Back Door?
Lisa Raines, vice president of government relations for GenzymeCorp., noted that her firm's genetic testing division, GenzymeGenetics, of Framingham, Mass., does not currently performpredictive genetic testing (it does offer diagnostic and prenataltesting), but may in the future. Nonetheless, she sees geneticsusceptibility testing as a vital public policy issue.
"HIAA is attempting to gut the [nondiscrimination] provision throughthe back door," she told BioWorld Today. "The strategy is to leavethe provision intact but then eviscerate it in the insurance policybenefits provision." If HIAA's modified language were adopted,Raines hypothesized that a woman who tested positive for theBRCA1 breast cancer gene might be faced with a situation in whichshe could obtain an insurance policy, but only one with a strict dollarlimit on benefits for treating her condition.
Myriad Genetics Inc.'s vice president of research, Mark Skolnick,emphasized the commercial and ethical importance of thenondiscrimination provisions in the pending insurance reform billswhen he spoke last month in Washington at the annual meeting of theAmerican Association for Cancer Research. Salt Lake City-basedMyriad is about to begin marketing genetic susceptibility testingservices for the BRCA1 gene _ a gene which has been linked tobreast and ovarian cancers. "Our test is less valuable to the public inthe absence of insurance reforms," said Skolnick. "The insurancereforms must take place."
HIAA, creators of the infamous "Harry and Louise" television adsthat helped kill President Clinton's 1993 legislation to overhaul thehealth care system, is a financially powerful lobby in Washington.Indeed, Raines characterized them as a "formidable" adversary. Butsecuring modifications to the nondiscrimination provision in thepending insurance reform bills may not be one of their top priorities.The bills are mired in other, larger controversies, such as the issue ofmedical savings accounts and medical malpractice reform.
HIAA's position on the larger issue of genetic testing is at odds withthe concept of strict confidentiality. Harvie Raymond, assistant vicepresident of HIAA, testified before the Senate Cancer Coalition lastSeptember that private medical information, including geneticinformation, is vital to health insurance carriers.
"Access to information is necessary if health plans are to identifyindividuals who are likely to develop a serious illness or disease,"Raymond said. "When the medical community begins using [genetic]tests, insurers will be at a disadvantage and at financial risk if they donot have access to the same information as applicants." However,Coorsh pointed out that currently, no member of HIAA has any plansto require applicants to submit to a genetic test in order to get majormedical coverage.
Lyle Dennis, a Washington public relations consultant and lobbyistwho heads the Genome Action Coalition, told BioWorld Today thatinsurance reform, like every other bill pending before Congress rightnow, is "a political football." Its fate will depend on how Clinton andGOP rival Sen. Robert Dole (R-Kan.) perceive the political value ofpassing such a bill.
The Genome Action Coalition, a group of 87 patient advocacygroups, companies and professional organizations, operates on anannual budget of $120,000. Dennis estimated that HIAA spends theequivalent of his entire annual budget "in a single afternoon," so aprotracted lobbying battle would be a distinctly lopsided one.Nonetheless, he vowed that his group will continue to fight againstthe misuse of genetic information by health insurers.
The next step for insurance reform will be a House-Senate conferenceto reconcile the bills from the two chambers and to craft a final billthat President Clinton could sign. One Congressional staffer whoasked not to be identified likened HIAA's approach to a midnightraid: "The conferences tend to get hectic and I'm sure HIAA ishoping for the classic 2a.m.-in-the-morning-language-swap wherethey just slip a few key words in there." n
-- Lisa Piercey Special To BioWorld Today
(c) 1997 American Health Consultants. All rights reserved.