Saying “Yes Thanks” to HIV Screening

English: The Red ribbon is a symbol for solida...
English: The Red ribbon is a symbol for solidarity with HIV-positive people and those living with AIDS. Français : Le Ruban rouge, symbole de la solidarité avec les personnes séro-positives. (Photo credit: Wikipedia)

In contrast to my rejection of (or questioning the real evidence in favor of) routine cancer screening practices in U.S. health care, I embrace the new HIV screening guidelines (due out later this month) from the U.S. Preventive Services Task Force (USPSTF). Their previous HIV screening guidelines, issued in 2005, only recommended HIV screening for adolescents and adults deemed to be at increased risk for HIV infection. The about-to-be released updated guidelines recommend that clinicians routinely screen all adolescents and adults ages 15-65 years and all pregnant women for HIV infection (as well as younger and older patients who are at risk for HIV infection).

They base their new recommendations on compelling evidence that earlier identification and treatment of HIV infection (before a person begins to have symptoms of disease) improves clinical outcomes for the individual, as well as significantly reduces the chance of transmission of HIV to other people. “The USPSTF concludes with high certainty that early detection and treatment of HIV transmission would result in substantial public health benefits in the United States.”

Since 2006, the CDC has recommended routine voluntary ‘opt-out’ HIV testing of adolescents and adults in the U.S. (opt-out meaning all patients be informed of routine testing and tested unless they decline). The CDC also recommended eliminating the pre-test counseling and the signed patient consent requirement for HIV testing, pointing out (correctly in my experience) that these act as barriers to HIV screening. The USPSTF clinical guidelines carry more weight with the passage of the 2010 Affordable Care Act that has a provision requiring all health insurers to cover all preventive services endorsed by these federal guidelines.

So today, on World AIDS Day, let’s remember the estimated 30 million people worldwide who have died of AIDS and the 60,000 people in the U.S. who have died of AIDS since the beginning of the epidemic. Let’s remember that HIV/AIDS continues to disproportionately affect people living in African countries, as well as African-American, Hispanic people and people living in the ‘Black Belt’ of Southern poverty in the U.S. because of social determinants of health. Let’s stop thinking of HIV/AIDS as something shameful/stigmatizing and a death sentence. Let’s “Work together for an AIDS-free generation.” Know your HIV status and encourage others to know theirs. This is a case in which we can steal the Komen Foundation‘s slogan “Early detection saves lives” and be telling the truth.

For a unique health-related holiday gift for yourself or for your loved ones (tongue and cheek), you can order the newly-FDA approved home rapid HIV test (Oraquick/uses a swab of fluid at gum line/takes 20-40mins) directly from Oraquick. It is delivered to your doorstep in an ‘unmarked brown box.’ You can also buy it (assuming you are at least 17 years old) from your local pharmacy. List price is $39.99 (exact same test only costs ~$17 in clinics/manufacturer says the increased price goes to pay for their 24/7 information hotline with bilingual English/Spanish representatives). In contrast, I’ve read estimates of the more sensitive HIV ‘blood tests’ available in clinics as costing on average $1.50).

Additional resources: Check out the website, and especially their link to CDC testing/treatment/supportive services (like mental health and substance abuse counseling, and housing). It has some cool downloadable apps for searching for HIV/AIDS related services in your area. If you don’t need to use it for yourself or your family, you can use it for patients you might work with. I’m glad to know I have 34 HIV testing sites within a 10 mile radius of my home.

Becoming a Nurse: The Book

Creative Nonfiction’s anthology is currently in press and due to be released March 12, 2013. The book’s full title is I Wasn’t Strong Like This When I Started Out: True Stories of Becoming a Nurse (Lee Gutkind, editor/In Fact Books).

Here is the official book blurb:

“This collection of true narratives reflects the dynamism and diversity of nurses, who provide the first vital line of patient care. Here, nurses remember their first ‘sticks,’ first births, and first deaths, and reflect on what gets them though long, demanding shifts, and keeps them in the profession. The stories reveal many voices from nurses at different stages of their careers: One nurse-in-training longs to be trusted with more ‘important’ procedures, while another questions her ability to care for nursing home residents. An efficient young emergency room nurse finds his life and career irrevocably changed by a car accident. A nurse practitioner wonders whether she has violated professional boundaries in her care for a homeless man with AIDS, and a home care case manager is the sole attendee at a funeral for one of her patients. What connects these stories is the passion and strength of the writers, who struggle against burnout and bureaucracy to serve their patients with skill, empathy, and strength.”

Lee Gutkind, dubbed by Vanity Fair as the godfather of creative nonfiction, is currently Distinguished Writer-in-Residence at Arizona State University’s Consortium for Science, Policy and Outcomes—where, among other things, he is “(…) helping scientists, engineers, nurses, lawyers, philosophers, etc share what they know with a general audience.” (Creative Nonfiction blog post 7-7-08).

In Fact Books is the new book imprint of the Creative Nonfiction Foundation. They have published two books this year: An Immense New Power to Heal: The Promise of Personalized Medicine(Lee Gutkind and Pagan Kennedy), and At the End of Life: True Stories About How We Die(Lee Gutkind, editor). Gutkind has a special interest in the narrative of medicine, beginning with his 1990 book Many Sleepless Nights: The World of Organ Transplantation (U. Pittsburg Press). In the introduction to the anthology he edited, Becoming a Doctor: From Student to Specialist, Doctor-writers Share Their Experiences (Norton/2010), Gutkind marvels at how there are so many writers who are doctors and doctors who are writers.

I look forward to reading Gutkind’s introduction to the “Becoming a Nurse” anthology, specifically how he addresses the paucity of nurses who are writers/writers who are nurses. Gutkind was reportedly surprised that they did not receive a flood of submissions for their “Becoming a Nurse” anthology, and wondered why there weren’t more nurses who write about their work.

I can think of many reasons why there are not more nurses who write (see my blog post “Nurses and Writing: Writers and Nurses” 3-31-11). Besides the fact that nursing is a servile, mainly female, “functional doer” profession that doesn’t require a basic four-year liberal arts education, nurses who want to write about their work are bullied out of it by their bosses. Quite frequently I hear from nurses who are writers (or who want to become published writers) that they have been threatened with termination by their employers if they continue to write about their nursing work—even when they are appropriately changing details in order to protect patient privacy. Because of the differences in professional power dynamics and the rigid hierarchy within the health care system, doctors who are writers do not have this barrier to writing—or at least not to the same extent.

But what that means is that Gutkind’s anthology on “becoming a nurse” is all the more important a contribution to the growing field of narrative medicine/nursing/health care. The book serves as a platform for a total of 21 nurses from around the world to tell their stories about what it means to become a nurse.

Transparency here: my essay “Next of Kin” is included in the anthology. My essay is the “a nurse practitioner wonders whether she has violated professional boundaries in her care for a homeless man with AIDS” in the book blurb. Thanks to a grant from 4Culture, I was able to complete the site visit/research for my essay (and book from which this essay is taken) last fall, in time to submit it to Creative Nonfiction.

At 320 pages and retailing at $15.95, the book I Wasn’t Strong Like This When I Started Out: True Stories of Becoming a Nurse ( is available for pre-order from your favorite bookstore—like mine here in Seattle: Elliott Bay Book Company. And if you live in (or want to travel to) the Seattle area, stay tuned for information on several group readings/presentations by some of the authors from the anthology—at Elliott Bay Book Company and at the University of Washington Health Sciences Library. Both events are still in the planning stage and will most likely be in mid-March.

The Lovely, Beautiful Unbroken

In the immediate aftermath of the September 11...
Image via Wikipedia

This is the first in what will be an ongoing collection of book reviews on newish literary non-fiction books by nurses, books about nursing, or about health care or marginalized populations. I’ve been immersed in reading the classics, and have purposefully been avoiding reading any books remotely similar to the one I am writing. But now that I am nearing completion of my book, I don’t fear derivative contamination.

Beautiful Unbroken: One Nurse’s Life by Mary Jane Nealon (Greywolf Press, 2011). A woman in my writing group recommended this book to me. Since our Shipping Group writer’s support group meets at Elliott Bay Book Company—a funky fun local independent bookstore—I promptly bought the book. When I looked at the cover—a photograph of a woman floating in water and the banner “Winner of the Bread Loaf Writer’s Conference Bakeless Prize”—I wanted to hate it. Out of pure jealousy. I was wait-listed for this year’s Breadloaf Writer’s Conference, which was being held the week I bought Nealon’s book. I didn’t get in, and Mary Jane not only got to go to the conference for free, she’d gotten her book published as well.

Being out of my teenage years, I swallowed my whining and jealous pride and read the book. Twice. I loved it. The book is a memoir, written in chronological order beginning from her childhood in Jersey City as a quirky Irish-Catholic girl who wanted to be either a saint or a nurse. From the book blurb on the back cover:

Beautiful Unbroken details Nealon’s life of caregiving, from her years as a flying nurse, untethered and free to follow friends and jobs from the Southwest to Savannah, to more somber years in New York City, treating men in a homeless shelter on the Bowery and working in the city’s first AIDs wards. In this compelling and revealing memoir, Nealon brings a poet’s sensitivity to bear on the hard truths of disease and recovery, life and death.

My paperback copy is dog-eared throughout. But the vast majority of turned down pages occur in Part Three of the book, when Nealon moves back to New Jersey to work in New York City with patients with cancer—then with AIDs. The first two parts of the book are somewhat necessary background, but I didn’t find them as interesting or compelling as the last part, when it also moves into her writing life. “I lived in medicine and poetry, and they were not enemies at all. They celebrated the synchronicity of discovery and hope, of desire and knowledge. I knew there were people all over the world who lived without poetry, but I didn’t know how.” (p. 143)

Nealon’s descriptions of the effects on her of the 9-11 NYC attacks, as well as of the life and death of her police officer father “Red,” are some of the most haunting in her book. Now there is another person to add to my list of favorite nurse writers, or writers who are nurses.