Actress and LGBT activist Laverne Cox urged Congress to support H.R. 5373, the LGBT Data Inclusion Act, which seeks "to improve Federal population surveys by requiring the collection of voluntary, self-disclosed information on sexual orientation and gender identity in certain surveys, and for other purposes."

"Indeed, because the federal government does not track LGBT, particularly sexual orientation and gender identity data, the lives of LGBT people in this country in a very specific way do not count," Cox said.

"Misinformation is allowed to be spread about transgender people because we don't have actual data about who trans people are and our lived experiences. LGBT people exist, we are a vital part of the fabric of this country and we just want to be counted."

Laverne Cox is correct that in order to be counted, people cannot be discounted. Without proper representation, any population can be spoken for instead of spoken with, much less speak for themselves. It also allows for unmet needs to become known so that they can be addressed by federal efforts, and that reasonable resources be allocated to meet these needs.

In the case of public health interests, the U.S. Centers for Disease Control and Prevention (CDC) requires that a number of prevalent or dangerous diseases be reported when diagnosed and treated by physicians. According to the U.S. Library of medicine, this mandatory "reporting allows for the collection of statistics that show how often the disease occurs. This helps researchers identify disease trends and track disease outbreaks. This information can help control future outbreaks."

In theory, these data are used to assess and meet needs--but this doesn't always work out. For example, the CDC estimates that more than 300,000 Americans contract Lyme disease each year, although only about 30,000 are reported to the CDC. So this indicates that the reporting process is not necessarily reliable or accurate.

Further, part of the reason diseases are accounted for is to allocate funding for necessary federal research and prevention programs and services in the interest of public health. However, the numbers don't always add up: Taking Lyme again as an example, there are over 300,000 new cases per year in the United States, and the NIH allocates $24 million per year to research Lyme. By comparison, NIH allocates $42 million per year to research West Nile virus, which affected just over 2,000 Americans in 2015. That's $80 per Lyme patient and $21,000 per West Nile patient, even as more and more Americans (including me) are affected by a chronic Lyme illness and demanding research that is not being conducted.

The point is not to compare LGBT populations to diseases; the point is to say that we can be counted but still ignored.

That's not a reason not to count us. LGBT people need to be counted.

We also need to be careful.

While the U.S. Census American Community Survey is not counting LGBT people, another Census survey is--in partnership with the CDC. As reported in 2014 by the Washington Post, the Census/CDC National Health Interview Survey (NHIS) counts LGBT people, and in its first report announced that:

Of those surveyed 1.6 percent labeled themselves as gay or lesbian, and 0.7 percent identified as bisexual. Another 1.1 percent responded that they were "something else," did not know their sexual orientation or declined to say, and 96.6 percent said they were straight.



The Washington Post subsequently observed--correctly--that "Gay-rights groups dispute federal survey's estimate of population." From the Post:

They contend it is a gross undercount and are particularly upset because they worked for years to get sexual orientation added to the 57-year-old National Health Interview Survey (NHIS), the government's premier measure of Americans' health statuses and behaviors. Now, the activists worry that the results will reduce the urgency of their causes and give fodder to their political foes. "The truth is, numbers matter, and political influence matters," said Scout, director of the nonprofit CenterLink's Network of LGBT Health Equity, who goes by only one name. "If we really are 2 percent vs. 4 percent, it means people are going to say, 'Okay, I'm only going to care half as much,' " he said.

And:

Many Americans believe the proportion of U.S. gays to be 1 in 10 -- a false figure promoted in the 1960s, drawn from a book by sex researcher Alfred Kinsey. The polling organizationGallup has found that a majority of Americans actually believe the proportion is even higher, closer to 25 percent.



What happens when you are counted, but you know the one who has done the counting is misrepresenting you? That's a question to think about.

Another question is why these results may be wrong in the first place. Scout, quoted above, told the Washington Post that the survey instrument may be flawed.

Unfortunately, just before I was diagnosed with Lyme disease--and after I had been sick for years with no explanation--I had my own experience with the NHIS. I was randomly selected to participate in the voluntary survey; because of my health, various people suggested that I opt out of the, again, voluntary survey. After being called on every phone number and found a note on my apartment door by a "doctor with the CDC," I called him back and asked to opt out of the survey.

He said no.

I told him the survey is supposed to be voluntary; he said it's not, really. Among the many things he told me, which you can hear here, were that "they" (the government, he clarified when prodded) "already have all your information." "How do you think that they have your phone number, your cell number?" he asked. "I've done other studies with them and they are very intrusive," "we did a survey last spring that was so intrusive that I wouldn't have answered the survey, but most people did," "they know everything about everybody," "that's why the NSA has been tapping everybody's phone calls, " and "no does not mean no for them."

I was, frankly, terrified by the intimidation tactics. I appealed to a CDC board of ethics and was told that this is not their normal practice; however, I was then effectively reprimanded via telephone by a Census "respondent advocate" for having complained, and then I was contacted by a second field worker who told me that Census workers are, indeed, told that they must get answers to voluntary surveys. This second worker told me that it is impossible to opt out despite being "technically" voluntary, and that "the only way to get them off your back is to answer the questions." She suggested I give false responses--to which I took exception based on the idea that it would be irresponsible to give false responses to a survey that determines to some extent public health.

Unsure what to believe, I found the NHIS training manual online. The manual reads as if it were written by George Orwell:

"The fact that participation in the NHIS is voluntary does not diminish your responsibility to convert reluctant respondents. When a person says the survey is voluntary and that he/she would prefer not to participate, tell them how important they are to the survey and how important the survey is to the Nation." "If no one is home on your first visit, find out from neighbors, janitors, etc., what the best time would be to contact the occupants of the sample unit. Try to find out from neighbors, janitors, or other knowledgeable persons when the occupants will be home; however, do not identify the specific name of the survey." "It is sometimes good for you to appear slightly bewildered by the respondent's answer. Indicate in your probe that it might be you who did not understand. (For example-"I'm not sure what you mean by that, could you tell me a little more?") This can arouse the respondent's desire to help someone who is trying to do a good job. However, do not overplay this technique." The manual also states "Make every effort to get complete names. If necessary, reassure the respondent that the information they give is completely confidential by law."

And also:

"NCHS currently links various records from NHIS with death certificate records from the National Death Index (NDI), Medicare enrollment and claims records collected from the Centers for Medicare and Medicaid Services (CMS), and the Old Age, Survivors and Disability Insurance (OASDI) and Supplemental Security Income (SSI) benefit records collected from the Social Security Administration (SSA). Files containing the personally identifying information are sent from NHIS to these federal agencies. Personally identifying information used in linkage includes: name, date of birth, Social Security Number and/or Medicare number, race, sex, state of birth, and state of residence."



Before we get to data collection--which is indeed an important means by which to be recognized and to receive necessary resources--we need to pay attention to how data are collected.

Two gay men I know from Florida told me years ago that they would "never file taxes as a married couple." Why not? I asked. It could save you money. "Because you never know what could happen...you're on the record as gay, and everything may be fine now, but if something changes politically, you're on the record as gay. No one saw Hitler coming."

That sounded crazy years ago, before my NHIS experience and before Donald Trump emerged onto the scene. Now, it's a bit less crazy sounding.

It sounds insane and paranoid to feel intimated or threatened by such an innocuous entity as the Census. For 50 years, it was rumored that the Census Bureau aided United States authorities in identifying and rounding up Japanese Americans for displacement and confinement in internment camps. The Census Bureau died the rumor--until 2007, when the statute of limitations ran out, and federal records supporting the claim went public.

So at the risk of sounding absolutely crazy and working against my own people's interest, make no mistake, I agree with Laverne Cox that LGBT people need to be better represented, respected, and cared for by our federal government. But there are problems.

The means by which the NHIS is conducted need to be changed. A voluntary survey should be voluntary, and field workers should not be encouraged to investigate properties, interrogate janitors, and to "convert" private citizens to disclose their personal health information voluntarily--even as we are told this information is protected by the HIPAA law. Field workers certainly should not be issuing vague threats about continued harassment and reminding prospective respondents that, really, they have no privacy anyway since as I was told, "the NSA listens to everybody."

Perhaps, just perhaps, if the people collecting the information are slightly more human, and more empathetic, they will be less likely to receive false voluntary self-reported information, and we can be represented.

But the caveat remains: It sounds paranoid to suggest that such information ever could be used against Americans who (technically, even if coerced) volunteer it. But even if all is well today, as it was before World War II, the tide can turn and the very information that is supposed to be used to help us can be used to round us up against our will. Before we asked to be inventoried, we should demand that we are fully equal under the law, and that we cannot be persecuted because of who or what we are. In this respect, we have a lot of work yet to do.