[cancer] Chemo, sex, Viagra and me

As I’ve mentioned before, sexuality on chemo has been a real challenge. Not impossible, but difficult. I’ve a very strong libido, which hasn’t been suppressed even by the experience of cancer, surgery and chemotherapy. But since my colon surgery of May 2008, my erectile function has been very erratic. That was a known side effect disclosed and discussed during pre-operative consent. Among other issues, the colon surgery disturbs the vagus nerve, which is involved in sexual functionality and response. As a result, my erections are infrequent, erratic and undependable.

Luckily for me, my sexuality has never been particularly dependent on good old Number One. I’m not even all that orgasm focused for my own part, so sex is still satisfying for me and my partners, but limited in some ways. Viagra has been reasonably effective in managing the erectile dysfunction up til now. But with the advent of chemo, the erectile dysfunction has gotten so severe as to be nearly absolute. Even Viagra is iffy, and I’m supposed to stay off it in part because my chemo cocktail raises my blood pressure, which doesn’t mix well with Viagra’s effects.

Most of the information about sexuality and cancer for men is centered on prostate cancer. I suppose the reasons for this are obvious enough. But any strong course of chemotherapy can interfere with sexual functionality, and as I’ve commented before, the medical information about sex on chemo is iffy. The drug companies and the oncology clinics are so paranoid about the potential for violent birth defects from the cytotoxic drugs — which can create birth defects on a par with Thalidomide &mash; that they simply won’t research or discuss sexuality on the drugs. There is an absolute fear of liability from defective pregnancies that trumps all other possibilities.

As I’ve pointed out to the clinic staff, about half the people in for chemo aren’t fertile. Older couples, gay couples, people who’ve had vasectomies or hysterectomies. Mostly they just won’t talk about it. I finally found one oncology Nurse Practitioner on staff who is a former AIDs educator. She’s willing to be frank, and has told me that most patients don’t even ask the kinds of questions I do.

My questions include:

  • What are the breakdown curves and byproducts of the chemo drugs?
  • What are the concentrations of those byproducts across my two-week cycle?
  • How toxic are my emissions — saliva, sweat, ejaculate — over time?
  • I’ve been forbidden most sexual practices due to bacterial risk. Is this absolute, or does my risk curve change over time?
  • For example, can I practice cunnilingus in my second week if my partner has just freshly washed and cleaned herself
  • Is unprotected penetrative sex a risk if I withdraw before ejaculation? How much so for me? (Ie, infection risk.) How much so for my partner? (Ie, concentration of toxins in pre-come over the two-week time curve.)

No one ever asks these questions, apparently. And no one wants to answer them. Millions of people go through what I go through, male and female, young and old. The medical establishment’s crippling fear of pregnancy liability denies us access to information about sexuality and lifestyle that can been critical to emotional health, relationship maintenance and self-image.

Now in my case, combine this with my insurance carrier’s very strange views on Viagra. The drug is reasonably effective for me, even now, though I can only use it sparingly. My doctor (pre-chemo) prescribed me 20 doses per month. For me, when I’m not exhausted or in the throes of some other major chemo side effects, a dose can provide a 20-30 hour window for effective erections — not continuously, but when appropriate. My carrier only allows five doses per month, at a co-pay so high that it approaches the over-the-counter-cost. My chemotherapy sessions (at $16,800 per pop) cost me less out of pocket than five doses of Viagra. Apparently in their estimation, people have sex one day a week. Which is ridiculous. My libido is dialed up much higher than that. I’m quite happily capable of two or three times a day so long as time and energy hold out.

And the carrier has been playing another rather shitty game with me. Every two or three months, they push back the renewal date on my Viagra prescription by about two days. They don’t do this with any of my other prescriptions. In effect, over about a two-year period, they are eliminating a month of coverage.

I have appealed the coverage all the way up the chain at my carrier. My claim is that Viagra is medically necessary to restore my lifestyle to its reasonable pre-2008 surgery levels. Their claim is that the Viagra limitations are contracted by my employer as part of the policy coverage.

Apparently I’m entitled to life, but not sex. I don’t like this, but it’s consistent with the extremely dysfunctional American attitudes about sexuality in general. But this ongoing rollback of my renewal date is just the carrier stealing from me what little they’ve already given me. And I deeply resent it. I resent a lot of things about what cancer and chemo have done to my sexuality, which is a huge part of my identity, but most of those losses have been natural parts of the treatment process. My insurance carrier stealing a Viagra from me every two or three months is just..what? Chicanery?

I’m going to call tomorrow and try to find out what their justification is. My expectation is that I’ll simply hit another brick wall, as I always do on this. Viagra is apparently the blood diamond of insurance coverage. Such a freaky attitude for something so basic, so medically necessary, and so critical to emotional and relationship well-being.

9 thoughts on “[cancer] Chemo, sex, Viagra and me

  1. This issue goes right to the heart of why providing health care to the poor is a hard issue politically.

    With most of the necessities of life, it’s pretty straightforward to come to some sort of consensus on what’s the minimum necessary for a decent life—so much water, so much food, so much living space. Critically, that minimum is really pretty consistent from person to person. (Sure, a strapping young man engaging in hard labor needs more calories than a petite, sedentary woman, but the differences are cheap to fill: give the bigger guy the same diet as the small woman plus a stack of peanut butter sandwiches.)

    With health care, though, there’s no level that you can say, “If you get this much, you’re getting all anybody really needs.” And, even if you could, you’re still stuck on the consistency issue: a healthy person needs almost no health care while someone with a treatable but expensive-to-treat illness might need hundreds of thousands of dollars in care.

    The exact same issues come up here. Some people go for years without having sex, which suggests that it’s at least arguable that sex isn’t necessary for a decent life.

    Plus, I suspect that there’s a lot of overlap between the sort of people who set policies for insurance companies and the sort of people who never get laid.

  2. pelican says:

    Yes, we Americans are incredibly sex-negative. The liability fears are part of the unwillingness of the medical establishment to go there and do the research. Practically, I suspect enrolling for those kind of studies could get tricky, too. But, I think a big part of the problem is that there’s a unexamined cultural expectation that you are SICK, and SICK people shouldn’t be having sex anyway … because you’re SICK, and SICK people having sex is icky … just like old, fat, disabled, or gay people having sex is icky.

    Also, there’s no reason for Viagra to cost so damn much, period, full-stop. It’s not like it’s that complex of a molecule or particularly difficult to make.

    I do wonder how the retail pricing decisions for Viagra get made. It seems like Pfizer would do better over the long-term with a Toyota price point for it, rather than a Lexus price point. I suspect they will discount heavily once they get a bit closer to their patent expiration date.

    I live in Canada now- if need be, I’d recommend heading up here and doing a little shopping.

  3. Stevie says:

    The Macmillan charity here in Britain has information about sexuality and cancer, and sexuality and cancer therapy, which may help.
    Presumably we ask more questions, since the website has answers to the questions which you were told weren’t asked. I’m not sure whether two urls will trigger your spam trap, but I’ll try it anyway:

    on possible side effects of your chemo on partners
    http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Sideeffects/Sexuality.aspx#DynamicJumpMenuManager_6_Anchor_3

    erection issues

    http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Relationshipscommunication/Sexuality/Solutionstosexualproblems.aspx

    Hope this is of some assistance…

  4. Cora says:

    Out of interest, do you know if your insurance company covers contraceptives, the morning after pill, vasectomies, abortions and the like?

    Because while Germany has universal health insurance, contraceptive pills used for the intended purpose, i.e. to prevent a pregnancy, have never been covered. However, contraceptive pills prescribed against acne or excessive hair growth or hormone supplements for menopausal women are covered. Vasectomies used to be covered only for people who had already had children (and it’s difficult to persuade a doctor to give you one, if you’re childless), since the latest reform they no longer are. Abortions are only covered in cases where medically necessary (and probably rape – I’m not sure about that one), plus the limits in Germany are pretty strict.

    Meanwhile, viagra is covered within limits that are similar to what you are experiencing, i.e. forget about wanting to have sex more than once a week. Fertility treatments, which are horrendously expensive, used to be covered fairly generously and are still covered, though the number of attempts is limited now. Pregnancy and birth costs and children’s healthcare (which is entirely free with no co-payment or extra premiums) are of course covered as well.

    So basically, men’s right to have sex and couple’s rights to have a child are covered by health insurance (within limits), but a woman’s right to have sex without fear of pregnancy is not covered. Now I can afford contraceptives, though being forced to pay extra on top of my insurance premiums (never mind higher social security payments and taxes, because I am one of those nasty childless people) makes me angry. But a lot of women on welfare or unemployment benefits literally cannot afford contraception and find themselves pregnant in already difficult circumstances. There recently was an initiative to at least cover contraceptives for women on welfare, but I’m not holding my breath for it to go through.

    IMO, everyone – men and women, young and old – has the right to enjoy sex without fearing health issues or unwanted pregnancies.

  5. Adelheid_p says:

    I would think that some of the infection risk they could tell you similar equivalents with AIDs patients. The chemical toxicity of bodily fluids like sweat, saliva and mucous membranes should be known as people still kiss, may be feeding a loved one or coming into contact with these particular fluids in other ways.

    The other issues make me sputter with outrage. Sexuality is a part of who we are, it’s largely the Religious Right that is the root of this fear –endorsing the thinking that sex is only done for the sake of procreation and that any other reason for having sex/making love is bad in some way. Which has a ripple effect on the insurance coverage, etc.

  6. My old insurance wouldn’t cover Viagra unless I had a diagnosis of total erectile disfunction (which, as I remember, Viagra can’t help with anyway). Since mine hit into the category of undependable (which frankly are the most frustrating), my former insurance wouldn’t cover any of the costs. Definitely shop around for the best cost. Typical prices in my market are $23-28 per dose for 100mg. I was able to find it for $16 at Sams Club.

    Also, if I were to qualify for coverage, I would experience the exact same renewal date shift. So the pawning off of responsibility to your day job negotiating is a bit disingenuous. I would guess it was part of their standard prescription packages.

  7. A nonny mouse says:

    I lived through a lover’s sexual struggles during cancer treatment, from erectile dysfunction to steroidsvthat ramped his libido, to crushing body-image issues and his wife’s horror of his colostomy, and psychological pressures of becoming breadwinner and caregiver. They needed help, separately and together, that was not even hinted at until they were miserable and desperate. We thought some of it was sex-negative culture, and some was that dearlove’s cancer was of a sort and stage not frequently found in men of 45. It didn’t occur to us that liability would play a role. Eye-opening post, Jay!

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