Tuesday, March 22, 2011

You will be bored with this. I know I am.

I had contacted one of the doctors involved in writing the guidelines behind the CPAC form. I send a copy of the 2001 form I found online, and a copy of our form from the fertility clinic. They looked different. Written by different people. Different wording. Either way, neither of them stated on the form that "duration of infertility" would be scored from the date of first doctor's visit regarding infertility, should one of the partners be sterilized.

I really thought I had found the piece of evidence I was looking for. I thought I had it. So close.

But today I received an email which, dear readers, nearly caused my computer mouse to be crushed in rage. It was a reply from one of the co-authors of the report mentioned above. He very politely told me that the form our fertility clinic had used was correct. And that their score of our case was also correct. I couldn't breathe. I was shaking and rooted to the spot. I feared to move in case I burst into a flood of tears, in the (shared) office.

Now, don't get me wrong. I have no malice against [the co-Author of the report]. It's just the system is so weighted against our particular situation that I now feel at a complete loss. I am writing this at quarter to one on a "school night" because I just can't sleep. Imagine a nice tasty acorn. Now see it bouncing around in my head. Now picture a squirrel, with small bells on each ankle, chasing it madly. That's what my brain is doing :(

For posterity, and you interest, I enclose copies of my emails to and from [the co-Author]:

(in reverse order: read from the bottom, mine in blue)

Hi [co-Author],

yes, please understand I do not "blame" you. It's an awful task to determine eligibility rules, and I realise you have had a difficult job to do. I also knew about the MoH raising the threshold. I suspect that may have come from a poor understanding on the Govt's behalf of the toll infertility takes on people. I have heard infertility described as an invisible disease, which you cannot truly understand until you have experienced it.

I will definitely be pushing for more funding, although as a patient in the NZ health system, who has received free healthcare my entire life, it is very strange and disconcerting to now be left entirely on my own. The system has not taken care of me. If this were a regular consumer service, now would be the time to talk to Fair Go, or Target, but it's too personal. It affects my entire family.

I want to say I really appreciate your help and clarification, I certainly wasn't getting any progress from Fertility Associates, so it is at least refreshing to have the facts, for once.

Thank you.

Kind Regards,
[Kaitake]


I understand your frustrations. However, as country, NZ is not that well off when it comes to Health funding and the CPAC system has gone a long way to try and make access fair to all.  We cant afford to treat everyone, and so we need to rank patients and offer access accordingly.  From data I have collected in Dunedin, from 1386 couples referred to us only half (667) had access within 1 year of referral, 449 had access up to 4 years from referral (as you will have) and 270 couples had no access at all.  If we could treat everyone  we would be delighted because we understand the stress of not having the opportunity to have a family.

In your situation you will  gain access in about 2 years, and so you will have the opportunity of having a family.

I guess you can blame me for this situation since I was the one that designed this scoring system.  But I hope you understand why I think the score is not flawed in your situation – for reasons I gave in the first email.  But as I said in the first email the score that will enable early access is dependent on how much funding is given through the Health Budget. When the CPAC was designed we argued 55 points should be the threshold, but the Ministry of Health declined this and it was set at 65.  So if the Govt increased funding we could reduce the threshold. May be you could lobby for that?

I wish you all the best [some text removed at request of author].

With best wishes
[co-Author]  




Hi [co-Author],

thank you for getting back in touch with me.

I appreciate and understand the explanation you have given, unfortunately I (biased as I may be!) think it completely and utterly unfair. I can see how in many situations, patients could distort the truth, however we have always been honest with our doctors at every step in this harrowing process.

Personally, I do not know how I should continue. Being told that I can't have a baby because of a piece of paper is awful, I imagine you have met many people over the years who "don't qualify" so you will understand the feelings I have.

I would just like to say that there was nothing I could have done to change this situation. As the partner who did not get the sterilisation treatment, I feel like my rights are being overlooked in this whole mess. But there is only so much money for treatment, I understand that. I just feel that perhaps the reasoning offered for denying funding in our individual case is flawed, and I know it will affect my life irreparably.

I guess I will go back to my MP and see if he has any useful suggestions. But honestly, I feel that I am at a loss. The system, while trying to be fair, is weighted against me. I do not see how I can proceed. If you have any suggestions, I would welcome them.

Once again, thank you for responding to my out-of-the-blue query.

Kind regards,
[Kaitake]



Dear [Kaitake], thank you for your enquiry.

The CPAC_from_FA is the current version used by all clinics in NZ. This one replaced the other one about 2006.
You have been scored correctly and have not been treated unfairly (compared to others in NZ). I hope the following will help you.

The fundamental issue with you is the “duration of infertility”.  In couples where one partner is sterilised the duration can only start from the time you first see a specialist regarding your fertility. I note you scored 20 points for duration at the assessment on 23/7/10.  But looking down further it looks as if Sept10 has been written in one column and Sept 2012 in another. All a bit confusing.  So if indeed 23/7 was your first specialist assessment then you should have been scored a total of 45 points in 23 July 2010, 60 in July 2011 and 80 in July 2012.  So after 3 years you will have access since your 80 points passes the 65 threshold.

There are a number of reasons why duration starts with the first specialist assessment.  Firstly it is deemed to be the fairest way to make the system work for couples where no one has been sterilised compared to couples where someone has been sterilised.  How can a couple where someone has been sterilised measure their ‘duration’? From the time you first met? Or the time you first considered wanting to have a family together?  You could imagine lots of couples might present the clinic with information that would promote their chances of having immediate access. I hope you can see this interpretation would make it very unfair on other couples not sterilised.  Imagine the fuss that would be created if you could have treatment straight away when someone with unexplained infertility had to wait 5 years!   Secondly In my own research I found that in couples seeking treatment (where one had been sterilised) only 40% actually proceeded with treatment. This was in the days (not so long ago) when ALL cases were publicly funded.

I know it may seem unfair in your case but to us as clinicians trying to juggle limited funding for so many we all believe the 3 year duration seems about right.

The threshold to access all comes down to funding.  If Govt funding was significantly higher then the threshold fo access may drop below 65.  If the threshold was 60 then you would have funding one year after the first specialist assessment.

You will note in the CPAC_from_FA form that if you had a vas reversal in private and it failed then the duration would shorten to 2 years.

I hope this helps

Regards
[co-Author]



Hi [co-Author],

Please excuse me contacting you out of the blue like this, but I believe you may be able to help me.

My name is [Kaitake] and I live with my husband in [name of city]. We have been referred to the Hamilton branch of Fertility Associates to discuss IVF treatment, with ICSI. [Hubby] has a vasectomy from a previous marriage. I am 28, he is 46.

The issue we are facing is not a medical one so much, but rather a bureaucratic one. See, Fertility Associates has scored us using the CPAC form, and they say we have failed to meet the minimum score of 65 points for access to publicly funded fertility treatment.. We do not believe this to be accurate. We firmly believe that we should score a 90 (not a 60!), and that Fertility Associates may be using the form incorrectly to artificially lower our score by 30 points. To find out if this is indeed the case or not, I am searching for information about the CPAC form itself.

Without boring you with the details of our case, I was wondering if you would be willing to answer a couple of questions I have regarding the CPAC form?

  1. I have a copy of the 2001 CPAC form (which I have attached: Gynaecology-infertility-CPAC.pdf). I gained this copy from the Bay of Plenty DHB's website <http://www.bopdhb.govt.nz/PatientInfo/PDFs/CPAC/Gynaecology-infertility-CPAC.pdf> , and phoned them to check if it was up-to-date. Their administrator assured me it was indeed up to date. Since you were on the advising board tasked with developing the CPAC form, can you tell me if this is indeed the most up to date version of this form?
  2. The second attached file (CPAC_from_FA.jpg) I received this week when I requested all my case notes from Fertility Associates Hamilton. I have noted that this form looks a lot different from the ones I saw both in your document Access to Infertility Services: development of priority criteria: a consultation document, and the PDF on the BOPDHB website, where I retrieved the first form I mentioned above. From reading the footer, I can tell that the form Fertility Associates used was in fact authored by the clinic manager of their Hamilton branch, and authorised by another member of their staff. I am worried that Fertility Associates is either using the wrong version of the form, and/or using it incorrectly. In your opinion, is the form which Fertility Associates have used to determine our score the correct form? Do you think they used it in the spirit of the consultation document you helped to write?
  3. If there is a later version of the CPAC form, are you able to send me a copy?
  4. Is there anywhere I may access a copy of the guidelines that accompany the latest CPAC form?
  5. I know that in cases on unexplained infertility, a waiting period of 3 years is required before patients can access funding for infertility treatment (during which time it is hoped that a natural pregnancy will occur). Fertility Associates is telling us that because Kerry is sterilised, that we also need to wait for those 3 years. This makes no sense to us as obviously a natural pregnancy cannot occur. They say that we lose points (-30 points) on the CPAC form because if one partner is sterilised, then the start of the "Duration of Infertilty" question is taken as being the first time the couple sought medical help. Are you aware if this is true or not? 


I have cc'd this email to my diabetes endocrinologist who has been helping me fight this unfair treatment by the fertility clinic. As you can imagine, this is a horrible situation to be in, and I am always looking for practical ways to advance our case.

Thank you in advance for your time, please know that I really appreciate it.

If you would like to know more about our experiences, I have been keeping a blog for the last year and a half. You are welcome to read it here: 
http://kaitake.blogspot.com

Kind Regards,
[Kaitake]

Now you see the sort of emailing I get up to at all hours of the day and night. I so thought I had it. But it's back to square one. The current facts of the matter are that we will have to wait a further 2 years before we are eligible to go onto an 18 month waiting list for the fertility treatment we need. Might as well be a million years. Sob. I am empty. Life is on hold.

[Note: the "co-Author" requested that these emails be edited so as not to reveal his identity. I had originally believed naming him was OK, as anyone with half an ounce of brains can easily figure out his name by Googling the name of the report. Duh. Sigh. Anyways, this mildly-bothersome censorship has been done as soon as I was notified that there may be a problem with it - as being a nice person I had never intended to cause an issue for this person. But if you are a patient and would like assistance, I will gladly provide it as best I can, as I believe that fertility patients in NZ are too easily left out in the cold and treated like second-class citizens. :( ]

7 comments:

  1. Oh, I'm so sorry to have to read this. It's crazy and not fair at all!

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  2. Oh no...I'm sorry, that really sucks! It must be so frustrating!

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  3. So sorry about all these stumbling blocks in your way... We have an entirely different systems here, with no real government funding for fertility treatments, most (all, but one actually) medical insurance companies do not cover treatment either. So private clinics are geenrally the only option, with a few clinics at tertiary government hospitals where treatment would cost less. Seems as though our "guideline" is 1 year - after which time you can seek treatment etc. Of course, because of the "no funding" situation here in a case such as yours, or other where a known conditions exists or has been found you would start treatment earlier than that.

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  4. holy crap unfair or what?

    i agree with you in that you seem to be being overlooked in determining treatment time, yes your partner may have been sterilised but that was before you two were together and it's not fair that you are now disadvantaged because of choices he made prior to even meeting you.

    it's things like these that make it even more infuriating to hear about people just thinking about getting pregnant and *wham* they're knocked up.

    i definitely think you should take the matter to your local mp and beyond if you can, be loud, be vocal about it and don't let them brush you off!

    good luck, i shall be following your journey and cheering from the sidelines!

    ~x~

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  5. So, so sorry you are having to deal with this!

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  6. As a relatively new reader of your blog, I just spent some time reading through your struggles. You really did everything you could in terms of self-advocacy. I admire that greatly!
    That said, I'm so sorry to hear you reached this bureaucratic brick wall. So disappointing and infuriating. ...

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  7. I know I'm a bit slow at putting any response-comments on my blog recently, but I just re-read all your comments here and it's really truly touching how you all care. It's wonderful to know I have support from wonderful people all around the world. Thank you :)

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