This background article addresses two different audiences. It is both an introduction for persons not familiar with AIDS and the HIV exclusion issue, and also a resource for activists; it includes information not generally available or not published before.
* The U. S. Public Health Service (PHS) has long maintained a list of “dangerous and contagious diseases,” mostly sexually- transmitted diseases, for excluding persons for public-health reasons from the United States. This list is widely regarded as obsolete by health experts.
* In June 1987 the PHS, under pressure from President Reagan, added AIDS to the list, but noted that the exclusion was not based on any new scientific knowledge and that “AIDS is not spread by casual contact which is the usual public concept of contagious.”
* In July 1987 the “Helms amendment” by Senator Jesse Helms (Republican, North Carolina) added HIV infection to the exclusion list. Because AIDS was already on the list, Congress thought the change was not important, and through a political compromise the amendment was passed unanimously in the Senate. Later, however, it would be argued that since Congress had put HIV on the list, only Congress could take it off — although in regard to all other diseases, the list was maintained by the PHS.
* In April 1989 Dutch AIDS educator Hans Paul Verhoef, on his way to an AIDS conference in San Francisco, was detained in Minneapolis by the U. S. Immigration and Naturalization Service (INS), an arm of the Department of Justice, when AZT was found in
his luggage. Through legal action by the conference organizers, a waiver was obtained, but only when the conference was ending. The AIDS community then realized that the June 1990 Sixth International Conference on AIDS in San Francisco, the major scientific meeting on AIDS in the year, could be disrupted because persons with HIV would be unable to travel to San Francisco to attend. A year’s effort by the Conference organizers and the AIDS community failed to end the ban; various waiver rules were devised, but there were problems with them. Because of the travel ban, over 70 AIDS, medical, and government organizations, including the International Red Cross, the British Medical Association, and the European Parliament, boycotted the meeting. Although the Conference organizers sent waiver instructions to potential delegates and organized legal panels in case of problems at the border, it is likely that thousands of people stayed away; thousands of others demonstrated at the San Francisco meeting. As a result of this experience, Harvard
University, which had been selected to organize the May 1992 Eighth International Conference on AIDS in Boston, announced that it would withdraw its sponsorship unless persons with HIV were able to travel freely to attend.
* In March 1990 public-health experts at the U. S. Centers for Disease Control recommended that all diseases except active tuberculosis be removed from the list of excludable conditions; HIV was left on the proposed list because it had been put on by Congress. The Public Health Service never acted on this proposal.
* In November 1990 the Immigration Reform Act of 1990 was signed. It directed the CDC to establish a new list of excludable conditions, based solely on “current epidemiological principles and medical standards,” by June 1, 1991.
* On January 23, 1991, the CDC published in the Federal Register its proposal that only active tuberculosis remain on the list of excludable conditions. (Other provisions of the law allow exclusion of persons with a dangerous mental disorder, one who abuses drugs, or one likely to become a “public charge,” i.e., to require government assistance. These sections have not been involved in the HIV controversy, however.)
* During a 30-day public comment period on this proposed rule, right-wing religious leaders generated 35,000 postcards and letters opposed to removing the HIV exclusion. And in Congress a letter from the Republican Study Committee, circulated by Representative William E. Dannemeyer (Republican, California) and signed by 67 members of the House of Representatives, opposed removing the ban. Opponents focused their arguments on immigration, not on travel, although for technical legal reasons it will be difficult to separate the two without new legislation, meaning that if the list proposed by the PHS (excluding only active tuberculosis) is not accepted, the travel ban will also continue.
* About a week before the June 1 deadline, a major dispute surfaced between the U. S. Department of Health and Human Services (HHS) and the U. S. Department of Justice; the latter opposed removing HIV from the list. Until shortly before that time, no one in the AIDS community had known that the Department of Justice was involved in the issue; the law clearly gives sole authority to establish this list to HHS. But politically, although the two departments have theoretically equal Cabinet rank, Justice is closer to the White House, and therefore likely to win a dispute; in addition, the 35,000 letters opposed, and the letter from 67 members of Congress, gave it additional advantage.
* Because of this conflict between Federal departments, an interim rule was put into effect last Saturday, June 1, and a new public comment period was extended for 60 days. The interim rule keeps the current exclusion list, including tuberculosis, HIV, and a number of other diseases, and keeps the waiver provisions negotiated in advance of the June 1990 International Conference on AIDS in San Francisco. However, this “interim” rule will not expire after the 60 days. It will remain indefinitely until replaced by another rule. Without an outpouring of public support for removing HIV from the list, the PHS will be reluctant to implement the decision — even one unanimously supported by medical and public-health experts. The current policy will continue — including the travel ban, which will affect the May 1992 International Conference on AIDS in Boston. Also continuing will be the deportation of HIV-positive applicants under the immigration Amnesty program, who have lived in the United States for at least nine years and almost certainly were infected here
— a policy which will certainly bring disrepute onto the United States.
Who is opposed to the PHS proposal to remove HIV from the list? What are their arguments? Three sources of opposition have surfaced: the 35,000 pieces of mail opposed, the 67 members of the House of Representatives, and the Justice Department. We will look at each in turn.
1. The Mail Campaign
According to a health department official quoted by The New York Times (May 26, page 1), much of the mail was generated by an evangelical broadcaster. We have not seen any of the broadcasts (we have heard there were a number of them), but we have received a copy of a mailing from the Christian Action Network of Forest, Virginia.
The mailing opens — even above the salutation — with the following:
“Are there not enough homosexuals with AIDS in the United States that we now need to import more?
“That’s exactly what’s happening — more homosexuals, more AIDS, more death being brought to the United States –thanks to the liberals within the Department of Health and Human Services.”
After the inside address — positioned for a window envelope — and salutation (Dear Mrs.______) — the message continues:
“I have but 30 days remaining to stop the Health and Human Services from approving a new policy that will allow homosexuals with AIDS to immigrate to the United States.
[underlining in original]
“But as president of the Christian Action Network, I desperately need your help.
“Please sign the enclosed postcard to HHS Secretary Dr. Louis Sullivan and mail it back to me at once. There’s no time to lose. You and I must act today if we want to win this battle.
“Your postcard demands that HHS Secretary Dr. Louis Sullivan abolish a new policy which would allow homosexuals with AIDS to immigrate to the United States.
“And I need your postcard to help me convince Dr. Sullivan that Americans like you are outraged.
“Without your signed postcard, HHS will surely cave-in to the demands of the militant homosexuals.
“Never before in the history of the United States have homosexuals been allowed to immigrate to our blessed land.
“And never before have AIDS patients been allowed to immigrate to the United States.
“But now — even while this deadly disease ravages our land — the United States is considering a proposal that would…
“…ALLOW HOMOSEXUALS WITH AIDS TO FREELY ENTER OUR COUNTRY AND SPREAD THEIR DISEASE TO UNTOLD THOUSANDS MORE AMERICANS.”
Three pages later:
“Yes, those liberals and homosexuals would gladly throw us out while they open America’s doors to homosexuals with AIDS.
“I’m angered and I’m ready for action.
“But I need your postcard to help me in my battle to keep homosexuals with AIDS out of America.
“I want to go before HHS Secretary Dr. Louis Sullivan and present him with your postcard. And I want Congress to know about your anger.
“I want to contact conservative opinion leaders in the media about your outrage.
“I want to lobby the halls of Congress.
“But first I need your signed postcard and whatever gift you can afford.”
The rest of the mailing is mostly about money.
2. Congressional Opposition
The letter below, on letterhead of the Republican Study Committee and signed by 67 Republican members of the U. S. House of Representatives, opposes changing the HIV entry ban. We reproduce it here so that the AIDS community will know what arguments are being made. The two sides of this dispute have talked to each other so little that even though this letter was sent last February, we had to obtain our copy directly from the Republican Study Committee, as we could not find any AIDS organization which had one.
We also reproduce the letter because of ongoing confusion, and possible misrepresentation, of the position of the American Medical Association. The Republican letter states that “The AMA agrees that HIV-infected individuals should not be permitted to immigrate.” This directly contradicts the official position of the AMA, stated in a recent letter to Senator Kennedy, that “The AMA has always opposed restrictions on HIV-infected immigrant travelers to the United States.” How many of the 67 Representatives would have signed the Republican letter on health policy if they had known that there was no medical or public health authority in support of its position?
Note also that the figures from the Orange County Department of Health, included in the letter, refer to the immigration Amnesty program. As we pointed out above, in order to enter the Amnesty program, these people needed to be living in the United States for at least the last nine years, and therefore they were almost surely infected here. The $3 million dollar cost estimate assumes that all of them get sick and die of AIDS — 100 percent at public expense. And it ignores the damage to the U. S. in world opprobrium, as persons infected here with HIV are deported to many countries throughout the world.
Also note that this letter distinguishes travelers and tourists from permanent immigrants, and argues only for excluding the latter. But the law gives HHS no authority to make such a distinction — although that is what, “at a minimum,” the letter asks HHS to do. It is easy to argue against foreigners with HIV immigrating to the United States, so this is the argument which is used. But the practical effect is to exclude travelers, too.
The first sentence is also worth noting — since the Justice Department now claims the authority to stop HHS from removing HIV from the list. Not even the 67 Congressmen who oppose the HHS position understood the law that way.
“Dear Secretary Sullivan:
“As you know, under the new immigration law passed last Congress, you have the discretion to revise the list of diseases used to exclude prospective immigrants who test positive for one or more communicable diseases. For the disease to be removed from the list, you must determine that is not a “communicable disease of public health significance.” [word ‘it’ omitted in original]
“The Federal Register, dated January 23, indicated that you are ready to remove HIV infection as well as other sexually transmitted diseases from the list. These reports come at a
time when the American Medical Association Report of the Board of Trustees recently stated that:
“1. The worldwide failure to substantially slow the pace of HIV infection, and reports in the United States of relapse in prevention behavior, give a mixed outlook for the 1990’s.
“2. No major scientific or medical breakthroughs occurred in the last year.
“3. The AMA agrees that HIV-infected individuals should not be permitted to immigrate.
“The American Medical Association concluded that all immigrants should be tested for the AIDS virus. Their recommendation states: “That the AMA support mandatory AIDS testing of…immigrants to the United States.” The report noted that immigrants “have historically undergone a health assessment before admission into the citizenship process.” The exclusion of testing “would be a change in a logical long-standing U. S. policy and difficult to justify on medical, scientific, or economic grounds.”
“We are writing to inform you of our strong opposition to this proposed change in law for the following reasons.
“First we believe that the HIV carrier who is unaware of his infection poses the same public health risk as the carrier of an airborne communicable disease like tuberculosis. As you know over 90% of those carrying the AIDS virus do not know their serostatus, and therefore have absolutely no reason to change their behavior.
“When the Ryan White bill became law last year, it provided hundreds of millions of dollars for assistance to selected cities hardest hit by the AIDS epidemic. This is a first for the government to provide aid for the effects of a
single disease, $350 million in 1991 alone. The bill’s proponents argued, in the words of one congressman, that “the AIDS epidemic is decimating the economic, medical, and human resources of many U. S. cities.” A recent study by the National Association of Public Hospitals stated that the number of AIDS patients surveyed more than tripled between 1985 and 1988. The strain caused by the rise in AIDS patients, among other factors, are [error in original] causing the nation’s urban public hospitals to crumble according to the survey. Now, only months after the Ryan White bill, the proposed policy seems to suggest that HIV infection is insignificant for public health purposes.
“We appreciate that proponents of this policy change are concerned about the exclusion of travelers and tourists. Our concern lies not with visitors, but with those who wish to permanently reside in the United States. It would be nearly impossible to screen visitors to the U. S. for HIV since there were more than 210 million lawful border crossings in FY1988 alone. Immigrants who are unaware of their infection would likely infect others and will require an average of $75,000 in medical care over their lifetimes, occupying physicians’ time and hospital facilities already in short supply. At a minimum, the HHS policy should draw this distinction between visitors and immigrants.
“The overall economic cost of allowing HIV infected immigrants into the U. S. will be significant. Orange County Department of Health in California reports that .5% of all those tested pursuant to the immigration amnesty
program have tested positive for HIV, 38 individuals in all. At $75,000 per person, that amounts to nearly $3 million in health care costs in Orange County alone.
“The timing of the proposed change is curious in light of the acceptance by more and more medical organizations and public health officials of the importance of early diagnosis of HIV infection. They all agree that the earlier
individuals know their serostatus, the better off we all are. It goes without saying that those immigrants tested for the HIV infection and who are found positive should also be expelled. Because this proposed policy jettisons the requirements that immigrants be tested for HIV, it promotes ignorance rather than knowledge.
“We urge you to withdraw this proposed change at the earliest possible opportunity.”
[signed by 67 Republican members of the U. S. House of Representatives]
Congressman William Dannemeyer led the opposition in the House to ending the HIV exclusion. While his positions on AIDS are well known, few know that Dannemeyer is perhaps the only member of Congress in U. S. history to have authored a book on homosexuality: Shadow in the Land: Homosexuality in America, published by Ignatius Press, San Francisco, 1989, $19.95, paperback $9.95. Sample passage: “The story of how homosexuality was declared ‘normal’ by the American Psychiatric Association is one of the most depressing narratives in the annals of modern medicine. Indeed, it is difficult to contemplate the details without wondering if our society is not in a state of advanced deterioration.” (page 24)
Over 40 pages are devoted to the chapter on AIDS and public policy. Its five subchapters (representing Dannemeyer’s “own list of priorities”) are “Widespread Testing,” “Reporting,” “Contact Tracing,” “The Restoration of Laws against Sodomy,” and “The Rejection of Antidiscrimination Laws.”
Ken McPherson, Special Projects Coordinator for Mobilization Against AIDS in San Francisco, describes Shadow in the Land as the blueprint for what the right wing has been doing on homosexuality for the last year and a half.
On a different health issue, Dannemeyer has fought for years against Federal and California efforts to ban sales of raw milk products as a health hazard. Major news reports on his role in this issue are “Dannemeyer Goes to Bat for Raw Milk,” Los Angeles Times, February 2, 1991, and “Judge Curbs Raw-Milk Sales as HHS Fails to Act,” The Washington Post, January 7, 1987. According to the Post, the regulatory dispute over interstate sales of raw milk had lasted 13 years. In 1983 Dannemeyer got 34 members of Congress to sign a letter opposing the proposal to ban interstate sales; Dannemeyer was a former general counsel for Alta Dena Dairy, the nation’s largest interstate distributor of raw milk products. In 1987 a Federal judge ruled that Margaret M. Heckler, then Secretary of Health and Human Services, had acted in an “arbitrary and capricious manner” in disregarding safety data, and ordered the Department to impose the interstate ban. The sale of raw milk products is still allowed in California and in some other states.
Congressman Dannemeyer recently became the ranking Republican on the Health and Environment Subcommittee of the U. S. House of Representatives.
3. Justice Department Opposition
Of the three sources of opposition to ending the HIV exclusion ban, the U. S. Department of Justice has been the most influential. It is also the hardest to report about, because so far as we can determine, nobody involved with AIDS has been able to communicate with the people in the Department who are making the decisions.In fact, until about three weeks ago, no one in the AIDS community seems to have known that the Justice Department had any special interest in the issue of HIV exclusion.
We called the office of Deputy Attorney General William P. Barr, described in a New York Times article as the leader of the effort in the Justice Department to exclude persons with HIV, and were referred to the press office. None of our calls to that office have been returned.
Since no representative of the Justice Department will speak with AIDS TREATMENT NEWS, we will report the Department’s position from press coverage; several informative articles have appeared.
The major report on the Justice Department role appeared May 28 in The New York Times: “Health Department Loses in AIDS Rule Dispute,” by Robert Pear. The Justice Department case, as described in this article, is:
* That HHS Secretary Sullivan may not have adequately documented his conclusion that AIDS is not “a communicable disease of public health significance.”
* That Sullivan had not consulted any senior officials in the Justice Department when making the decision, even though the Immigration and Naturalization Service, within the Justice Department, would enforce the exclusion list. [However, a January 14, 1991, report in Modern Healthcare said that Sullivan was seeking comment from both the Justice Department and the State Department on the proposal to revise the list of conditions requiring exclusion — even before publishing the proposal in the Federal Register.]
* “After receiving a torrent of public comments criticizing the proposal” [the right-wing mail campaign illustrated above], HHS officials said that the Justice Department could use another provision of the law, the “public charge” section, to exclude persons likely to cost the government money for medical expenses. “But Justice Department officials led by Deputy Attorney General William P. Barr argued that it was completely impractical for an immigration examiner to make a sophisticated analysis of an alien’s infection and health insurance coverage to determine whether that person might become a public charge in 5 or 10 years.”
According to a May 30 report by the Associated Press, “One administration source said the Justice Department it will take 60 days to make the list’ of its objections.”
Questions for the Justice Department
Since we cannot reach any spokesperson for the Department, we will publish here the questions we would ask if we could:
* What is the legal basis for the Justice Department overruling the Health and Human Services on the content of the list of excludable conditions? The Immigration Reform Act of 1990 explicitly names HHS alone as having authority to create that list.
* Has the Justice Department consulted with any AIDS or public-health experts whatsoever before deciding to block the HHS plan to follow the recommendations of its U. S. Centers for Disease Control and list only active tuberculosis as an excludable condition?
* Does the Justice Department have any statistics indicating that there could be a substantial cost to the government of the new policy — or contradicting the figures we presented above showing that the number of persons who acquire HIV abroad and then try to immigrate to the United States is minimal?
* Can the Justice Department reconcile the January report, cited above, that Dr. Sullivan asked for its comments even before publishing the HHS proposal in the Federal Register, with the New York Times story, also cited above, which quoted Justice Department officials as saying that Sullivan had not consulted “any senior official” in that Department?
* Is the Justice Department behind an apparent attempt to use another section of the immigration law, the mental health section, to exclude persons with HIV on mental-health?
The interim rule published Friday, May 31, includes the following paragraph:
“In addition, we solicit comment as to whether and, if so, to what extent section 212(a)(1)(A)(ii)(I) provides a legal and policy basis for excluding classes of aliens not excluded by this interim final regulation.” (Federal
Register, May 31, page 25001.)
Here is the relevant section of the law (the Immigration Reform Act of 1990, Section VI, Exclusion and Deportation):
“(A) IN GENERAL. — Any alien —
“(i) who is determined (in accordance with regulations prescribed by the Secretary of Health and Human Services) to have a communicable disease of public health significance, “(ii) who is determined (in accordance with regulations prescribed by the Secretary of Health and Human Services in consultation with the Attorney General) —
“(I) to have a physical or mental disorder and behavior associated with the disorder that may pose, or has posed, a threat to the property, safety, or welfare of the alien or others…”
Note that the law gives sole authority to Health and Human Services to write the regulations on “communicable disease of public health significance” — where the issue of excluding persons with HIV has been fought so far. But section (ii)(I) gives authority to Health and Human Services “in consultation with the Attorney General” — the head of the Justice Department — to write the regulations.
AIDS TREATMENT NEWS has been told that the paragraph quoted above from the May 31 Federal Register was included because some people want to use it to list specific conditions, especially HIV infection, in that section. This would create a second exclusion list, separate from the list of communicable diseases. At present, the mental-health section does not list any specific conditions — but in previous years, both homosexuality and epilepsy have been listed as mental diseases automatically excluding foreigners from entering the United States.
Attaching a list to the “physical or mental disorder” section could give the Justice Department an end run around the current debate. The law explicitly gives HHS the sole authority to determine the communicable-disease list, and the Justice Department has temporarily overruled HHS only through political power. If HHS does not back down, and if President Bush is unwilling to order it to list HIV as a communicable disease, or to fire and replace HHS Secretary Sullivan, then the Justice Department might still accomplish the exclusion of persons with HIV from the United States by adding a separate list to the “physical or mental disorder” section, where the Justice Department does have a legally mandated role in developing the regulations.
Note: As we went to press, it was announced that the head of the Justice Department, Attorney General Dick Thornburgh, will resign in a few weeks to run for Senate in Pennsylvania. A page-one article in The New York Times (June 5) called his running for the Senate “the chance to make a graceful departure from a troubled tenure as an Attorney General.” We do not know whether or how this change will affect the dispute with Health and Human Services on AIDS.
Comment: A Pervasive Hostility
Ten years after its discovery, AIDS has killed well over 100,000 Americans, and endangers the lives of about one million more. A community has developed among thousands of dedicated volunteers and professionals working in the epidemic. Most of us have lived through the deaths of dozens of personal friends.
And for ten years, this emergency team has faced a pervasive institutional hostility. This hostility is notable in that it is typically expressed not personally, but by use of official positions and powers in destructive ways. It is seen in the U. S. Department of Justice, which in the last three weeks has muscled its way into AIDS to sabotage reforms overwhelmingly supported by public-health experts throughout the world — without even discussing its plans with those who have fought this epidemic for years, or examining the data gathered by its own Immigration and Naturalization Service, or reviewing the impact of the ban on scientific and medical conferences. In cancer or any other disease except for AIDS, it would be inconceivable for a non-medical Federal agency to unilaterally impose a major policy decision, with no discussion at all with experts or others involved — and, as far as we can tell, with no medical input whatever.
The question arises as to what the AIDS community could do to bring the ongoing hostility to an end, to better work together as a nation and a world to control this national and world epidemic.
It is hard to find an answer. The hostility keeps coming no matter what we say, do, or are. Being passive and silent, as if to avoid upsetting people, is not a workable solution.
We can only do what we have done before, to work and to fight as best we can. Some day the future may be different.