Rica Lode’s Personal Experience with PGD (Part 8)

This is a Genetics and Health exclusive multi-part series featuring Rica Lode’s search for preimplantation genetic diagnosis for neurofibromatosis 1 (NF1). To start at the beginning of Rica’s story in her own words, here are part 1, part 2, part 3, part 4, Part 5, Part 6, and Part 7. Today, Rica talks more about the financial considerations of seeking PGD and also bids us farewell.

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Due to its costs, IVF-PGD program is not easily accessible to the normal man or woman on the streets. Countries such as New Zealand, Australia and UK have schemes where the locals could apply to sponsor partially of their IVF-PGD program, provided they satisfy its certain conditions. I came to know of this lady whose IVF-PGD in UK is almost entirely sponsored by her national health service. In USA, those who has insurance can be relied upon to off-set costs of IVF and genetic testing. I’m not certain whether their insurance covers PGD. In Malaysia, I recently discovered we have the Tunku Azizah Fertility Foundation (TAFF), whereby they help to sponsor infertility couples for IVF treatments.

Upon initial enquiry, the fertility clinics would usually give the costs of one cycle of IVF and PGD. This does not usually cover consultation fees, pre-treatment fees, drugs costs and so on. If you decide to do this program out of your home country, you would need to add the costs of accommodation, air flights tickets, living expenses for a minimum of 2 weeks in the country where you do the program. The fees quoted would usually be higher for foreigners compared to locals. Here is the list of quotes that I had gotten worldwide:

• Malaysia – USD 5978.26 – USD 6793.48 (RM22,000 – RM25,000)
• Thailand – USD 8000
• Hong Kong – USD 8000 – USD9000
• USA – USD 15,000 and above
• UK – USD 8405.71 – 11,207.61 (4500 – 6000 pounds)
• Australia – USD 10, 777.17 – 11,547.55 (A$ 14,000- A$15000)
• New Zealand – USD 7480.43 (NZ $ 12,000 )
• Canada – USD 7550.68 ( C $8500 )
• Belgium – USD 8139.39 ( Euro $ 6350 )

For those who opt to go for PGD due to single gene disorder like Neurofibromatosis and Huntington’s Disease, you must have a mutation report. In fact, all the fertility centres requests for this before they can proceed further discussions with you on their program. On top of the above-mentioned fees, you would need to include the mutation report fees. The genetic report for NF1 cost USD 1200. At the same time, you would need to add the costs of the probe, that is created based on the genetic report, to detect genetic disorder in the embryo.

I admit looking at its costs above, we would have trouble coming up with the expenses especially if it is beyond Malaysia. For now, we have to concentrate on getting the genetic test done. Before my husband could do so, he may need to undergo certain MRIs and certain medical examination based on the request form of the genetic test. Recently I accidentally discovered Malaysia has a geneticist in one government hospital. I am in the midst of waiting for his assistant to email me for our first appointment.

If you came across my posts during the research on NF or PGD, my advise to you is to hang in there especially in challenging moments. Keep on reading and get yourself educated. The internet has a vast amount of information on these subjects from doctors, scientists and established societies. Do not be deterred if your own doctor do not think much of your efforts and even try to dissuade you from reading further.

For those who has been following this series, thank you for taking the time to read them. This post is the end of the series. I would like to thank Hsien Hsien for offering me this opportunity to share my thoughts on our IVF-PGD journey. I do not really know where we will go from here as we are very much at its preliminary stage. It may takes us a while due to the costs factor. To me, I feel that IVF-PGD fees should be made affordable especially for those who do this due to genetic disorders. Isn’t it the aim of IVF-PGD after all? IVF – to give infertile couples a chance to have children and PGD – to give couples who has genetic disorder risk, a chance for their child to avoid from inheriting this. Costs, I find is the biggest deterrent for even the middle class. For those who like to find out more about PGD, you could check out links such as below:

BioEthics Today – Electronics Bioethics Resources for UK
The Andy Blog – this was created by Andy’s father. Andy Trevino suffers from Ectodermal Dysplasia with a primary Immune Deficiency caused by a mutation on the fourth part of the NEMO gene.
Center for Genetics and Society
Genetics And Health by Hsien Hsien Lei

Best of luck for those who are like us on the IVF-PGD journey. For those who are not, I hope I have enlighten you the humanity aspect behind this scientific program.

Thank you so much, Rica, for sharing your deeply personal story with us. It is a privilege to learn more about what you and your husband are going through. I hope this series has caused people to think more about the impact PGD has on people’s personal lives.

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