Hello, SOGC

Hello.  It’s Me.  I am ranting once again about HPV

Well, not about HPV, just the vaccines.  Actually, not just the vaccines: pretty much everything I heard at a day-long SOGC workshop with the long-winded title, “Women and their Reproductive Health Across the Continuum: Setting Priorities for Women’s Reproductive Health Research”.  Attending were both health professionals and interested individuals.  And me: women’s health advocate and HPV vaccine skeptic.

Regarding the latter, I waited till the very end of the day to finally screw up my courage.

“I am about to state a very unfavorable opinion.  There are reputable health professionals who are opposed to mass HPV vaccination; in part, because some of the research has been tainted by conflict of interest; and also because of the way public messaging has stigmatized parents who have decided not to vaccinate their children.”

I added that equating infection prevention and cancer prevention is what has made public health and Big Pharma messaging so compelling to the general public.

There was absolutely no response.

The Sunnybrook Hospital meeting space was set up like a dinner party, with long lines of tables, labelled with discussion topics for the afternoon.  Speakers’ topics were preceded by the title, “State of the Evidence”: Human Papillomavirus, Fertility, Contraception, Menopause and The Environment.  Three out of five talks set my teeth on edge.

First up, Dr. Nancy Durand.

After giving some basics about HPV types and statistics (10 – 30% of adults are infected at any given time – good one) and the risks for persistence (being over age 30, smoking, having multiple sub-types and immunosuppression) she launched into straight into HPV vaccines as public health strategy.

Dr. Durand assumed, correctly, that she had the room in terms of the evidence she presented on the three available HPV vaccines regarding efficacy and safety.  She said that doctors should treat these vaccines like flu shots and encouraged doctors to say, “Have you had your HPV shot yet?”  She suggested it could be administered to babies with their childhood vaccines.  She quoted research that indicated there should be no upper limit in vaccinating; and that even if one had already been infected, vaccination was still effective (first time I’d heard that).  And yet…

Hello from the other side

My electronic files are full of evidence of conflict of interest (COI) between researchers and pharmaceutical companies and the attempts to expose them.

Moreover, the accepted medical evidence also insists that the only adverse side effects are irritation at the site of injection and increased fainting.

Japan has changed direction on HPV vaccination.  France, Spain  and Denmark have also reconsidered their position.

Fertility

Dr. Heather Shapiro did not mention potential environmental causes of infertility.  When I asked her about this, she said that was a whole other talk.  She leapt into Assisted Reproductive Technologies starting at IVF without passing through less invasive techniques like IUI.  I did find out that 90% of IVF babies are healthy; and the rates of success decline with age; and that there are now fewer multiple births.  Her talk was less about fertility and infertility that assisted reproductive technologies.  One presumes the research is directed towards treatment rather than prevention.  No mention of Pelvic Inflammatory Disease.

Contraception

I was glad to hear Dr. Dustin Costescu discuss unintended births in the context of the social determinants of health.  He said they occurred more often in younger, racialized, poor and Indigenous women; and that the greatest risk was due to systemic factors.  Among the contributors to non-use were being a sexual or gender minority, funding, and failure to initiate contraception.  He also blamed health care providers who sometimes recommended a “washout”; i.e., stopping a method to see if side effects subsided without offering a replacement method.

He pointed out changing trends.  With women having their first child around age 30, they require about 11 years of contraceptive use.

I was glad to hear him say that researchers needed to understand women’s experience through qualitative research regarding access, counselling, decision making and understanding side effects.  In our discussion session in the afternoon, he acknowledged that front-line workers have a lot to contribute to research.  Here are some of my contributions in WordPress:

 

Menopause

Any of the women attending who had not already gone through menopause and were listening to Dr. Jennifer Blake were probably bug-eyed looking at the list of what sounded like inevitable symptoms.  Early on in her talk, she said that perimenopause, the 2 – 3 years preceding the cessation of menses, was the “best time to get help”.  Now if that isn’t a clear medicalization of menopause, I don’t know what is.

Dr. Blake was quite definitive.  The “pleats” that make women’s vaginas stretch more easily smooth out.  You’re going to shrink, was the message.  Not to mention the loss of bone mineral density, the release of lead stored in the bones, changes in blood vessels, changes in abdominal fat metabolism, decreased carbohydrate tolerance, loss of lean muscle mass, vasomotor symptoms (hot flashes that could last up to 20 years), mood changes, reduced stress tolerance and memory changes (or as comedian Sandra Shamas tells us, loss of nouns.

And, oh, yes, loss of libido.  I’ve had a few thoughts on that one as well.

Dr. Blake gave a nod to the importance of exercise and good nutrition before moving ahead with hormone therapy (HT), “the single most effective treatment”.  She spent a good deal of time discussing the history of research on the effects of estrogen, in particular, how the Nurses’ Health Study was written and interpreted.  One telling statement at the end of her remarks on HT: “there is a higher risk of breast cancer with later pregnancy than with hormone therapy”.  In other words, you don’t need to worry about using HT.

Not all women experience menopause the same way – and that also applies to women around the world, their diets and lifestyles.  Women who suffer greatly from menopausal symptoms who consider HT are well advised to limit the duration of its use.

Environment

I’ve saved the best for the last. Dr. Eric Crighton laid it all out.  There are currently 80,000 registered chemicals currently in use.  7,000 new industrial chemicals are introduced annually.  Pregnant women have 43 different chemicals in their bodies.

He pointed out that some people are at higher risk than others, most notably those Indigenous people who are living with contaminated water and mercury poisoning.  Of course, we are all exposed to environmental toxins.  According to Health Canada’s 2010 statistics, they caused 13% of disease burden, an increased risk of prenatal and early childhood effects.  He talked about pesticide exposure and its effects on the brain development of four year olds…in short, he scared the *&*^% out of his audience.  I was sadly familiar with some of these issues, in particular through the Canadian Women’s Health Network.

There is good work being done by CPCHE which has published a number of useful brochures, but he pointed out that individual actions are not enough.  Moreover, he said when someone is struggling, for example, to feed their family, environmental toxins are low down on their list.  If you can barely afford formula, the plastic in the bottle becomes a non-issue.

I spoke with him afterwards, thanking him for mentioning the struggle of nail salon workers to limit their exposure to workplace toxins.  He was aware of the work of the Toronto Healthy Nail Salon Network.

Hello from the outside.  At least I can say that I’ve tried

I’m not sorry I went.  I did learn a few things and have checked out a dozen links to the studies quoted.  But there was little opportunity to challenge the experts or change the tone of the discourse.  It does make me wonder why the SOGC invited us in the first place.

Do it Yourself Swabs

I was approached by a med-tech start-up company regarding their self-collection device for at-home screening “to prevent cervical cancer and Pelvic Inflammatory Disease (PID)”.  The Eve Kit’s promo video and Indiegogo funding campaign explains the device and their motivation for designing it.

Violeta Cobo, Territory Manager, said that “HerSwab™ (the device that collects the sample) has been approved for self-collection of cervico-vaginal samples” by Health Canada.  The device is to be launched in late 2016.

The promo video raised a number of questions for me.

The device was registered with Health Canada for “safety, efficacy and intended use”, but as I explained to Jessica Ching, co-founder and CEO, the term “approved” is open to interpretation.

But that was only a quibble.

How exactly did they intend to test for cancer, HPV and “STIs which could cause PID”?  Was the device a Pap test?  An HPV DNA test?  A swab for chlamydia and gonorrhea?

Ms. Ching explained that the device is not a Pap test.  It can sample for either HPV or gonorrhea and chlamydia depending on which test the woman prefers.  To detect HPV, the device collects the sample from the upper vaginal canal.  The lab uses PCR amplification to test for high-risk strains of HPV.

However, because Pap tests use cytology when they sample from the cervix, I expressed some concern in case the self-sample result was inaccurate.  A meta-analysis concluded that self-sampling and physician sampling were equivalent; but studies are ongoing.

Regarding the self-sample for chlamydia and gonorrhea a small study (189 women) found their swab for “easy, comfortable” and “suitable for diagnosis”.

As to what happens after diagnosis, Ms. Cobo responded:

“When a patient gets a positive result, she gets referred to one of the doctors we are going to work with. The doctor will follow up with her and prescribe treatment or refer to a screening visit (in case of HPV) if needed.  She could also grant us permission to share the results with her family doctor if she has one.”

However, when I asked about the availability of those doctors, Ms. Ching admitted that to date there were very few with whom they have been able to partner.  The ideal, she added, would be to eventually offer follow-up across the country; however, one of the rationales for the product is precisely the dearth of health care providers.

Do women want to do it for themselves?

The promotional material for the $85.00 kit argues that women find testing “awkward” and that they may not have time to see a health professional.  They also see at-home privacy as a plus.

I asked Ms. Ching about research they had done into whether and why women would prefer at-home testing.  They did focus groups with 20 women and spoke with 50 others from whom they gathered anecdotal information.  She also mentioned focus groups conducted by the Dalla Lana School of Public Health and St. Michael’s hospital and commented, “Our informal findings did mirror the findings of other published studies”.  A CMAJ commentary asks whether the time for self-testing in Canada has come.

The CMAJ commentary poses the question from a public health point of view about women at risk in Canada who might truly benefit.

In Australia, self-testing will be available in 2017 – to targeted women.  For me, this is the real public health issue.  In Australia,

“Women who don’t normally get pap smears – including indigenous women, victims of sexual abuse and those who avoid the test for cultural or religious reasons – have the highest rates of cervical cancer.  These are the women who, from 2017, will be able to collect their own tissue samples in world-first changes to the country’s screening program”.

Targeted self-testing strikes me as an improvement on the selling points of awkwardness, privacy and time constraints.

In Canada as in Australia, the women who get cervical cancer are not screened regularly and/or do not have follow-up and treatment for abnormal Pap tests.  They are poor, marginalized and Indigenous.  The Canadian government’s response has been expensive vaccinations for girls (and in some provinces, boys) against HPV.  Women’s health advocates would prefer to see better access to screening and follow-up through Pap registries; and improved access to health care, especially in remote areas.  According to the CMAJ commentary, some pilot testing of self-sampling has already taken place for these high-risk women.

The value of health professionals

 As someone who worked in a sexual health clinic as a counsellor for three decades, I have one more issue.

When a woman came in for testing, I explained the Pap test, what it was for and how it was done.  In fact, I often accompanied her to the examining room to translate (Spanish, French and occasionally very inadequate Portuguese) and in some cases, to hold her hand, especially when there had been past sexual trauma.

Counsellors use an intake sheet which covers not just medical, but also sexual history.  We find out if the woman has a history of sexual abuse, if she has been having unprotected sexual activity, if it was vaginal, anal or oral, if she understands the difference between the Pap test and STI testing.  We find out which STI she should be tested for depending on her risk factors.  We tell her about contact tracing in case we find a reportable STI.  We explain that HPV is very common and that only certain types may lead to cervical cancer unless the abnormal cells are treated.

These conversations are critical in helping a woman take control of her health in a way that DIY testing cannot.

Given the cost and limitations, it remains to be seen what role self-testing might play in this country.

 

 

 

Chickens coming home to roost

If you have a cervix, read this.

In 2013, I wrote a blog on new provincial and federal cervical screening guidelines (https://springtalkssex.wordpress.com/2015/01/08/confused-about-pap-tests-july-2-2013/) partly because women’s health advocates were worried that these updated policies were putting women at risk in order to save money.  There was no risk, in my opinion, in delaying the initial Pap or from the longer interlude between screening tests.  But there certainly was a risk: not informing women of the difference between cervical screening and Sexually Transmitted Infection (STI) testing.

Because most Human Papilloma Virus (HPV) infections resolve on their own, research indicated that earlier and annual testing did not decrease sickness or death from cervical cancer.  Even high-risk HPV infections that cause cellular changes on the cervix tend to resolve on their own without treatment.  Cervical cancer develops when there is persistent infection with a high-risk type of HPV in the presence of co-factors like a suppressed immune system.  Pap testing (and/or HPV testing) indicate when treatment is necessary to prevent its development.

When Cancer Care Ontario (CCO) published fact sheets to inform the public about the new guidelines, I contacted them to point out that they also needed to provide information about the importance of STI testing.  It was obvious to me at the time that there would be repercussions.

I had been selling the annual Pap as part of sexual health education classes for years.  Suddenly, young women (including trans men with a cervix) were being told they didn’t have to start till they were 21 (Ontario) or 25 (federally); and they didn’t need to have a Pap every year.  So, of course, many stopped having internal exams until they were told they had to.

Young women, in my experience, especially those whose annual Pap test coincided with – and in some cases were dependent on – their birth control pill renewal, had no idea what was going on during their internal exam.  Despite the efforts of sexual health educators in the classroom to distinguish between the Pap test (checking for abnormal cells on the cervix) and STI screening (swabbing the cervix and inside of the vagina) when they arrived at clinic for their exam, counsellors had to take the time to explain it again. It is not clear if Physical Education teachers and family physicians today consider it important to educate about this important difference.

So what’s the big deal?

The importance of the distinction becomes clear when we look at the statistics.  According to the lead researcher of a recently published article on this issue (see below), over the past 10 years, chlamydia and gonorrhea rates in Canadians rose by 72 and 53 per cent, respectively, especially for chlamydia.  The highest number of cases of chlamydia are diagnosed in young people between the ages of 15 – 24.  The increase in diagnoses was in part due to Public Health Units encouraging an increase in testing in the early 2000s.  The urine (NAAT) test (v-e-e-ry appealing to men) also brought in more young people for testing.  One of the suspected behavioural reasons for the increased number of cases was less condom use among older adolescents and young adults who made the switch from condoms to hormonal contraception without being tested first.

Untreated chlamydia, which is commonly asymptomatic, can do serious damage to the Fallopian tubes.  Moreover, untreated STIs which provoke an increase in white blood cells at the site of the infection, make it easier for HIV to enter the bloodstream.

Here come the chickens

St. Michael’s Hospital in Toronto raised the alarm about a decrease in testing in their recent study (http://www.sciencedaily.com/releases/2015/10/151015144701.htm).  The lead researcher said, “…we found that women weren’t visiting family physicians as often for Pap tests, causing a drop in STI screening as well.  Female patients were also less likely to be screened for syphilis, hepatitis C and HIV under the new guidelines…”

When I contacted Cancer Care Ontario to complain about the lack of information on the importance of ongoing STI testing, the woman I spoke to thought it would be confusing to try to explain the difference between the various types of testing.  Prior to writing this blog, I re-visited the CCO web-site looking for what I hoped would be updated literature.  There is still no mention at all of STI testing.

The takeaway for readers with a cervix is this: if you have had unprotected sexual activity, whether you have symptoms or not, see your health care provider even though it is not time for your Pap test.  They will look at your genitals; they will test you for chlamydia and gonorrhea and any blood-borne infections you may have been exposed to.

As for me, I guess it’s time to contact CCO medical directors encouraging them to read the St. Michael’s study.  I wonder if they still think it’s too much for women’s brains to handle.

Read more here:

Cancer Care Ontario information on screening: https://www.cancercare.on.ca/cms/One.aspx?portalId=1377&pageId=9550