Living Kidney Donation

I recently appeared on the Tonight programme “kindness of strangers” and later  on the BBC World News along with Dr. J. Lowney from matchingdonors.com to have a discussion on their organisation which was coming to the UK.

I contacted them to see if they would answer some questions that I and others had regarding their organisation and the role it had here in the UK.  They readily agreed to answer any questions I had but unfortunately, 5 week later they are still not answering any, regardless of repeated  requests. They are now ignoring me 🙂 .   Here is the (lengthy) list of questions I have put to them.  Anyone considering joining the organisation either as a donor or potential recipient may want to read these first before making a decision.  If matching donors responds to any questions I will publish them alongside the relevant question.

QUESTIONS:

The system

Paul Dooley is quoted as saying “The old system of ‘Give us your organ, we’ll decide where it goes’ no longer works. We have the ability to take our system to the UK and save their lives.”

Since the first non-directed altruistic donor was approved in 2007, the HTA have approved in total 160 donors 33 of which were approved in the first half of this year. There are also many potential donors being worked up at the moment with 30 at one transplant unit alone.

1.        Given that the altruistic donation system is very new in the UK, that the numbers of altruistic donors in the UK is increasingly very rapidly year-on-year, and also bearing in mind that the UK population, and thus the pool of potential donors, is a small fraction of that of the USA, on what basis can Paul Dooley justify his statement that our system is no longer working?

2.       Has matchingdonors.com had any legal challenges?

3.       Do all American transplant centres accept directed altruistic donors?

Patients

4.       Does your organisation inform transplant units that one of its transplant waiting list patients is registered with you?

To read more of the questions click this link

5. i.    Does your organisation have guidelines on what can be said and done in the “advert” from the patient?
ii.       Are there any absolute “no’s”?

6.       What background checks do you carry out on patients?

7.       How do you verify the emotional appeals that the patient places on your website, to ensure that their stories and pleas are truthful?

Donors

8. i.      What background checks do you carry out on potential donors to ensure that they are physically and emotionally suitable to donate?
ii.         What counselling is available to prospective donors?
iii.        Where do the pre-transplant checks take place?

9.        What checks do you carry out to ensure that no incentives are made to a donor? By incentives, we mean not just financial ones, but also other incentives such as assistance in obtaining residence in another country.

10.      What information do you provide to potential donors concerning the health risks associated with kidney donation?

11. i.   What steps does your organisation take to protect the identities of potential donors?
ii.         Do you give any advice to donors concerning protecting their anonymity?

12.      You clearly state on your website that, “Patients can only deal with donors within their own country.”
i.          Does that mean that a UK donor can donate to a US citizen as long as the donation itself takes place in the USA – that is, the recipient’s country of residence?
ii.          Or would UK donors only be expected to donate to UK recipients?

13.       In the UK, donors have annual check ups after donation for life.
i.           If a UK donor can go to USA and donate, who then becomes financially responsible for the donor’s follow up checks?
ii.          How would you propose that check-ups for overseas donors are carried out?
iii.         Would the recipient pay for the donor to return to the USA for medical checks to be carried out?
iv.         Or would the recipient pay for the check up in the donor’s country of residence?
v.          Or do you intend that the National Health Service here would fund this?

14. i.     What information do you have about the health of donors and recipients following matches made via your website?
ii.          Do you monitor this?

15. i.   What happens if a donor who has been matched via your site suffers health problems after a transplant?
ii.          How is their health care funded?

16.       Who would be responsible for the health care of a UK donor matched via your site if they suffered adversely as a consequence of their donation?

17.i.     What happens if a potential donor wishes to withdraw from the process without donating?
ii.          What support is given should the donor decide to withdraw from donating.

Fees and services

18.       Fees for your members are quoted as including the facility to post a profile on website and “all included membership benefits”. You also say, “Every patient that signs up for a membership will receive many services”.

Please can you clarify exactly what benefits members receive in return for the fees that they pay and in particular, what benefits UK members in particular would receive?

19.      We understand that if patients are unable to afford your fees, they are able to register for free.
i.         How many patients are currently registered with you without any fee being paid (that is, without either them paying a fee or someone else paying a fee on their behalf)?
ii.       Will UK patients be able to join without any fee of any kind being paid?

20.     Your website says, “Once a match is made the rules and regulations required for a live organ donation apply. MatchingDonors.com is interested in helping develop the match.”
i.         How exactly does your service do this?
ii.        What help would you give to UK donors and patients to develop this match?

21.      Your website says “..but once the contact between the parties has been made, the road to transplant surgery is their own”. Do you offer any assistance at all to any of the parties?

22.      Your User Submission statement says that if patients complete the form but do not subsequently pay your fees and join, that then gives you permission to contact them “by telephone and e-mail on a regular basis to see if we can help you get your membership completed”.
i.          What is missing from the membership apart from the fee?
ii.         How many times do you contact someone who has not paid the membership fee and have you ever been accused of harassment?
iii.        How many times, and by what means, would you contact UK patients in order to obtain a membership fee?

Terms and conditions

23.      In your terms and conditions, you say that, “Additional products and services can be purchased”.
i.          What are these additional products and services for those in the UK?
ii.         Are these products and services supplied by Matching Donors or another company? If another company, which

24.     Patients pay high fees to become members. However, you still stipulate that they must carry out actions on their behalf, including sending out their profile to every donor at least three times a week until they have found their donor and had their surgery, as well as responding three times a week to every donor with a compatible blood group that contacts them. Patients must contact all donors via telephone where they can.
i.          Why do you require patients to do all of this?
ii.        What further levels of expense in the form of telephone calls are patients expected to incur?
iii.       Why is this not included in the service for which patients have paid?
iv.       What measures do you take if patients fail to do this?

25.      Your terms and conditions also state that “In consideration of being allowed to use any part of matchingdonors.com, you agree that the following actions shall constitute a material breach of these Terms and Conditions which will permanently remove you from the website and you agree to pay a fee of $250,000 US Dollars to matchingDonors.com for each infraction – paid to MatchingDonors.com within 30 days of the infraction” , examples of infractions being: “ 11. Posting the same note more than once or “spamming”.
i.          What is the purpose of this?
ii.         Have you ever enforced this?
iii.       If so, on what grounds?
iv.       Will this apply in the UK?
v.         If so, under which laws would you seek to enforce it?

Relevance to the UK

At the moment, it appears that, although you have purchased a .co.uk domain name, there is very little on your website which is geared to UK patients and donors, and this is disappointing. For example, you inform UK citizens that the FBI will pursue them if they try to sell an organ, although the FBI does not have jurisdiction in the UK. We also note that the only contact number is one in the USA. The main purpose of the UK site appears to be to point potential members to your US site.

26.        Do you intend to offer UK contact numbers and information that is relevant to UK members?

Further, we are concerned that you appear to be taking little care to protect vulnerable UK patients and potential donors. Patients are very vulnerable and at times quite desperate to get the transplant they need. Signing up to a website and paying a high membership fee means that they put their trust in the organisation behind the website, and yet your site does not have helpful information, such as easy-to-find guidelines on how to protect themselves during the whole matchmaking process leading up to donation, nor UK based phone numbers or contact details they can turn to. Your site tells people to contact their physician with any questions. That is fine for medical questions.

27. i.      However, this type of scheme has never been done in the UK before, so who do your members turn to if they feel something is not quite right in the whole process?
ii.            Who do they contact if they start feeling uncomfortable with their “match”?

990-EZ submissions

Your organisation’s 990-EZ submissions shows that all the revenue received came from contributions, gifts, grants and so on. With regard to revenue received from membership dues and assessments no entries are made against that for any year. However, you charge nearly $600 membership.

28. i.    Why are no membership dues shown?
ii.          Where are receipts from membership fees declared?

29.       At the end of 2010 you had net assets or fund balances of $175,126.
i.           Are any monies ear marked for helping UK people who register with your organisation?
ii.          Would you be prepared to fund a part time UK consultant that members can turn to for assistance?

30.        How will accounts be made available for your income from the UK?

Affiliate scheme

We are interested that you run an affiliate scheme. By placing links on websites or emails, a person can earn 25% of the membership fee. “You can earn money – a 25% commission – by getting people needing organ transplants to join MatchingDonors.com. This means you will earn $148.75 for each $595 life time membership that is signed up from your link” You go on to say “We will also pay you a second level commission of 5% if you get people to do the same thing you are doing; this way other people could be continuously earning money for you.”

31. i.     How many people have done this?
ii.          Who are they (for example, current patients)
iii.         Do you pay them from membership dues?

Competition

You are running a competition via Zooppa.

“Earn a little cash work with prestigious Hollywood professionals and most importantly help save a life! – Make a 30 second video that promotes, celebrates, and/or teaches about being a living organ donor on Matchingdonors.com” the video must contain two phrases “Nineteen people die every day waiting for an organ transplant” and “Everybody can Save a Life by being a living organ donor on Matchingdonors.com”

32.        As the subject of the video is about a living organ donor on matchingdonors.com, does this not in fact constitute offering an incentive to organ donors?

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