Letters received, a decision made

This week a letter arrived back from the Member of Parliament (MP):

Monday, 21 March 2011


Dear [Kaitake] and [Hubby]


Thank you for the copy of correspondence between yourself and [One of the authors of the report: Access to Infertility Services: development of priority criteria: a consultation document. Simply referred to as "Author" from now on]. It was interesting to read and after the meeting in my office, it became clear that the single issue stopping funding at this point is when the three year time-frame officially commences for a couple who have one partner sterilised.


[The Author's] comments around the duration of infertility and balance of fairness they seek to manage are important considerations.


Following up from your recent visit and the information you have previously provided, I have written to the Minister of Health and received a reply last week from the Hon Tony Ryall, which I enclose to you.


The Minister's third paragraph mentions that a request for a second opinion on the review of your CPAC score can be made to the [local health board]. [The Author's] opinion is that the CPAC score was correct according to the criteria; however seeking a further review and if possible, a fresh assessment which takes into consideration [Kaitake's] diabetic condition, may be worthy of further consideration.


I know that IVF treatment is expensive. Failing public funding, consideration around personal funding is something you could consider if the waiting period is too harrowing for you. These are deeply personal and highly important issues and I wish you all the very best in approaching the [local health board] for a review.


If we can be of any further assistance please don't hesitate to contact my office.


Kind regards,
[MP]

and here is the letter from the Minister of Health that the was mentioned:

14 Mar 2011


Dear [MP],


Thank you for your email of 25 February 2011 on behalf of your constituent what has asked if her application for publicly funded IVF treatment can be reviewed.


Your constituent will have been assessed by a clinician using the clinical priority access criteria (CPAC) tool. CPAC is a decision-making tool to assess a candidate's suitability for publicly funded fertility treatment and takes into account a variety of factors such as the candidate's age and Follicule Stimulating Hormone level. Decision on who qualifies for publicly funded IVF treatment are made by clinicians.


Ministry of Health officials advise me that a second opinion to review your constituents's CPAC score can be requested from [the local health board]. Your constituent can contact the Chief Executive of [the local health board] by writing to:


[contact details enclosed]


Your sincerely


Hon Tony Ryall
Minister of Health

There are just so many things wrong with these letters it's unbelievable. The MP suggest we pay for fertility treatment ourselves (well, duh! of course we would if we could! we're not all BMW owners). I don't particularly feel like divulging all our financial concerns to him, I mean, I think I've been pretty honest so far. Told him about our fertility problems for godsake.

Then there is the Minister of Health politely passing-the-buck back to the local health board. Who don't offer fertility services. Oh, yeah, and I consider it pretty insulting the way he has just parroted off some crap about FSH... there is nothing wrong with my FSH. Get with the picture and stop telling me useless pieces of information. It's so reassuring to know that when the clinic gets it wrong, you can't actually get results from the government, because "clinicians make the decisions". And who monitors them, eh??

And I especially like the way that no one has taken notice of the fact that there is actually more than one issue for us here:

1. in our case, a 3 year wait is a penalty. We are being penalised for my husband having done the socially upstanding thing of having a vasectomy in his previous relationship. There is no medical reason for a 3 year wait (with unexplained infertility, waiting 3 years = 80% chance that the couple will have conceived naturally). In fact, for us it increases the chance of my having a child with Down's syndrome, or having complications, or dying in childbirth. (we will be eligible for public funding in September 2012, I will have clicked over 30yrs. We will still have an 18 month waiting list after that. The earliest I could become a Mum is 2014 or 2015, it may even be 2016. I better bloody have my flying car by then, cos that's the future.)
2. the incredibly bad and uncaring way in which the Hamilton FA clinic has treated us, like we are second rate citizens
3. the way the CPAC form is engineered against us, specifically designed to deny us the right to have a family. It is discriminatory. The points are not deducted for having a sterilisation, or something logical like that, which I could understand. No, the 30 (!) points we lost were because of a catch-22 situation where the have to engineer a "when did your infertility begin?" date, so they base it on the first time you saw a doctor for infertility. This totally discounts 7 years of my life where I've wished for a child.
4. the CPAC form does not take the male-partner's age into account, only the female's. This is unfair and discriminatory. In our case it especially important as my husband and I have a significant age difference.
5. How the Government did not accept the recommendations of the advisory panel, to set the CPAC threshold at 55 (which would mean we qualify) and instead set it at 65. Money. Always money. And since infertility in basically an invisible disease, there is no massive groundswell of support, say like for breast cancer, or diabetes.
6. the way that the GP and then the OB/GYN both took our money and did loads of invasive tests, only to refer us to the fertility clinic at the very last minute, wasting valuable time. NZ patients are actually allowed to self-refer to fertility clinics. No one told us.
7. The fertility clinic for insisting that I have an unnecessary operation, and the stupid OB/GYN for taking plenty of public health money to perform the operation.
8. that there is no regulating body where I can take a complaint regarding the paperwork side of the fertility industry.
9. the sheer injustice of the situation, how bloody unfair and illogical it is, how it's put my life on hold, how it invades my every waking moment :(

So Hubby and I have made a decision. We will make one last attempt with the letter-writing and shit. And then leave it. Because, honestly, no-one cares. I've been crying every night this week and it doesn't make anything better. I can write emails and letters to everyone until I'm blue in the face. But nothing is working. No one will help. Or no one can help. It's useless. But I will try one last time.

Please excuse my foul language. I am in a bad way.

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. :( ]

All work, no rest

It has been a hectic two weeks. And the next two will be even crazier.

We had the step-kids come to stay, so their Mum and Step-Dad could go overseas for a mate's wedding.

Hubby had leave from his job so he could work as a sound engineer on a massive music festival held in town. He started on Thursday, so I haven't seen him during daylight hours for 4 days now. We have been meeting in the wee hours "hi how was your day?" "hmmph, go back to sleep". Although somehow, he still gets up to make me breakfast! Even working 15 hour days. Such a sweetie! :)

You know I am studying for my tertiary teaching diploma, well the deadline for the first assignment has snuck up on me. I have NOTHING prepared for it. I went and had an emergency meeting with my tutor, and she confused me even more. Bah! I goddamn hope I teach better than that! I sense a last-minute cram coming my way...

So, I'm a student in one class, I teach four classes, and for the next two weeks I will be team-teaching on a fifth class. I don't know how many hours per week I'm working, but all I know is that it doesn't stop once I get home! I got one night off last week, and every other night I was working on lesson plans until 10pm. It's getting tiring. I am living on vitamin B tablets and bad cafeteria sandwiches.

And that fifth class is on a subject that I've never taught before and don't really know much about: mark making (read: experimental drawing). Now, I'm a design tutor, not a fine art tutor. I had to have another emergency meeting with my HoD to discuss how overloaded I'm suddenly getting, and that I had basically NO CLUE what to teach for this class. She has kindly offered to help out with the lesson plan, but it's going to be cutting it close.

On the diabetes front, it's been all over the place. I have had quite a few bad lows mainly due to stress, or doing more exercise (just walking between classes mainly) than expected.

I also had a couple of interesting lows yesterday (Saturday). I went for a 1hr bike ride along the coast, and started off about 16mmol/L, by the half way point, I was sitting at 8 (good), and I mentally told myself that I would need to stop on the way home and drink the juice in my backpack, to save myself from going low. Well, I forgot. I sailed past my intended stop-point. I kept pedalling, but all of a sudden it was like my bike was made of cement. My thighs felt like jelly. The sun was incredibly hot, and I was in a cold sweat. I biked into a shady spot and got off. Sat on a rock, did a test. 3.5 (low) great. I skulled back the juice and decided that I had chosen a very pretty spot to stop. :) The juice was working, but at juice+10 mins I had not risen as fast as I would have liked, especially since I had to bike another 5Km home yet. I scrummaged around for a fruitbar and ate that too, then biked off home. I had to have a nap when I got home. Lucky I set an alarm, because when I woke an hour later I was down to 1.5mmol/L!! Cue: how to eat honey very very quickly.

In IF news, well, I am getting disillusioned. I think I have made a breakthrough in finding that the fertility clinic may have used the wrong CPAC form, or used it incorrectly, to figure out if we are eligible for publicly funded treatment. Trouble is, everyone I've told about it is being very quiet. I don't know where to take the information now. I feel really lost and alone in this fight, and with the effort it takes to keep up with work, keep up with diabetes, the IF stuff is just not getting the time it needs. I try to spend a couple of hours a week writing emails, blogging, or making phone calls, but it's getting just so hard to find the time. And it's especially demoralising when no one responds to emails. :( Wah.

Truly random shopping

The best way to ensure you get an exciting range of groceries when you go to the supermarket is to.....




....yes?




.....of course! Have a hypo! Why didn't I think of that?!

Last night I was super-tired from a really long hard week, but we had the step-kids to stay for the week so we had run out of groceries. I still don't believe how much 3 teens eat!

Anyway, so I drove to the supermarket at about 8.00pm, got a trolley, and wheeled through the fruit'n'vege section picking bananas and mixed nuts. Slightly random, but nothing to be too worried about.

By the time I got to the cereal and juice aisle, I was yawning so much people were looking at me. Like, huge, uncontrollable, too-big-for-my-mouth yawns. I was feeling cold, and my eyesight was getting a little flickery.

Next aisle: pasta, rice, sauces, soups. Something is feeling very wrong. I am gripping the trolley quite tightly, and driving very carefully. The supermarket staff are re-stacking the shelves. There are boxes to drive around. For some reason, this is getting very difficult. It takes all my brain power to appear "normal".

Closing in on the chicken soup, I tell myself "my vision is flickering: something is wrong. DO A TEST YOU IDIOT!!!!" So I stopped and tested right there in the aisle.

2.3 mmol/L

OK, you will have some food in your purse. Dig in and find it. One lonely fruitbar = 15g.

Drive trolley until a shelf-stacker can see you pull the bar out of your purse, and not steal it off the shelf (silly, the things my brain devotes power to in an emergency situation!). Rip plastic wrapper off bar, stuff into face. Chew. Swallow. Repeat. Strange looks from the small asian woman with too much makeup just to be stacking the tinned tomatoes.

Complete another two aisles. Choose things that I think are appropriate. Things I think we need. Realise that a single fruit bar is not enough to combat a 2.3. Start to crave juice. Walk the trolley back to the juice aisle. Make the conscious decision to get juice, then get out.

Get a multi-pack of juice boxes. Gripping the trolley quite tightly now. Must look like a ghost, as the check-out chick asks me if I am ok. Hold on. Wait until it's paid for. Wait until you're outside (stupid brain with low-logic!). Add several chocolate bars from the impulse-purchase shelves at the checkout. By some miracle, I was able to remember my pin number once I had swiped the card, and complete the transaction. Whew.

Concentrate on getting out to the car. I have no memory of putting the groceries into the car, or taking the trolley back. I do remember telling myself: "don't start the car. Don't start the car. Eat the food. Sit there and eat the food and WAIT." Do you know how hard that is? When all you want to do is get home as fast as possible? Away from these people who all seem to be staring at you? It's dark, the carpark is suddenly a very scary place. I cram chocolate bars into my mouth and sit, waiting, for 10 mins to go past.

I get home OK. Uneventful. Drag bags of groceries inside. Hubby immediately sees something is up. Apparently I look really pale. My legs ache. I take a 15 min nap, then a really hot bath to get rid of the leg aches. A Friday night I hope to forget.

*p.s. had to go back this Saturday morning to get the rest of the things I'd forgotten! haha :P

Here's the beastie!

All my case notes from the Hamilton clinic of Fertility Associates arrived yesterday.

I saw the envelope in the letterbox and I had to just grab it and basically run to the front door! I was so nervous. I put it on the chair without opening it, and looked at it. This was the moment I would finally see the dreaded CPAC form that the clinic had used to deny us funding for fertility treatment. Then I decided I was being silly and tore into it. Here's what I got:

CPAC form - the real one that FA used to score us   :(

You may not have immediately noticed, but see if you can spot the difference between the form above (written not by the Ministry of Health or any other official government body, but by the very clinic manager who has been such a pain.in.the.arse to me) and the form below...

Link to the PDF of the CPAC form I had found on the Bay of Plenty DHB website.

Picture of "official" (as far as I know) form:

The CPAC form that I found online. Spot the difference?

I dunno, the form from FA just looks bogus. There are many differences between the two, but perhaps the most surprising thing is that instead of scoring us the way I had expected, the numbers are a little different too.

For instance, obviously the consultant from FA had only given us a tiny score for "Duration of Infertility", but she had also, unexpectedly, given us the highest possible marks for "Number of Children". I thought that we would only get an (8) for that question, but since the FA form is worded "Children at Home" rather than "Number of Children" we scored a (30). Which was a little say of sunshine in this paperwork quagmire! lol :P

Yeah, so instead of getting a (50) for "Duration of Infertility", we only got a (20). Stinky poos. The form obviously doesn't say ANYTHING about penalising us because hubby has a vasectomy. In fact, the only other place we lost marks was the question "Sterilisation", where we got a (10) half marks.

FA gave us a 60. Minimum pass score is 65. I thought we were due a 68. Turns out we are due a 90!!!

Well! That's more like it!

Now, I only have a couple of things to do:

Contact the Doctor who was on the advisory board that figured out how the CPAC form should be made. Hopefully he will be able to answer my questions about the form. I'm pretty sure that the one FA is using is NOT identical to the "official" one authorised by the National Health Committee.

Contact my diabetes endocrinologist, and share this news with him. He's been really helpful and supportive of this crusade so far. I'm sure he will be most interested.

Contact the advocate from the Health and Disability Commissioner's office, who, unfortunately, gave me a defunct email address so has received nothing I've sent her for the last month. Dumb. Phone it is, then.

Update the Member of Parliament. He's promised to contact the Ministry of Health on our behalf.

Get-writin' my letter of complaint to Fertility Associates Hamilton. Because, no matter how this turns our, so far I am not impressed.

I am incredibly relieved that the CPAC form FA sent me proves my theory, so far. My theory that they have illegally and unlawfully discriminated against us and artificially lowered our score by 30 points, OR perhaps, they just don't know how to use the form properly. Which, for a medical establishment, is a worry in itself.

I think that the first option is more likely. That way, FA are hoping we will give in and pay for private treatment. But we just can't afford it. And this is putting my life on hold. I have to do this right. It's a delicate situation, like trying to hold a jelly in your hands without letting any slip. I feel like if I give too much away, show my cards to early, FA will just steal all my hard work away and not change our score. And not let us have access to funding, or treatment, or pregnancy, or birth, or motherhood.