Public area - News, events, announcments - Topic started by Rupert Whitaker - October 21 2013, 12:11 pm

Title: Proposal for HIV Rights and Responsibilities policy-group: feedback wanted
Post by: Rupert Whitaker on October 21 2013, 12:11 pm
The Tuke Institute has posted a consultation-document ( ( on the creation of a new framework of Rights and Responsibilities for people with HIV. We propose the development of a consensus-statement that updates and broadens the Denver Principles to address current realities around criminalisation, increased transmissions, travel-bans, treatment-rationing and poor health-services, stigmatisation, etc, which link up with the work of the NAT, the HIV Justice Network, SeroProject, BHIVA, and many others internationally. The document is also attached.

The general purpose behind the document is to create and gauge interest in the formation of a participatory policy-group of scholars and community-experts in HIV to address ethical and practical issues affecting the response to the HIV pandemic. We present initial ideas, identifying some of the primary issues that a framework of rights and responsibilities in HIV would need to address in order to ensure maximally effective clinical and public health-services, among other things. Such a framework would be used to promote better health-policy and health-services for people with HIV and it has consequences for broader policy-creation, service-commissioning, and service-provision. The focus would most likely develop if it engenders initial interest.

We would greatly appreciate any feedback you have, which can be anonymous and will be private. Please tell us what you think, what you like, what  you don't like, what is lacking and why, and anything else you'd like to say about the idea. Thank you!

Title: Re: Proposal for HIV Rights and Responsibilities policy-group: feedback wanted
Post by: Rupert Whitaker on October 22 2013, 03:05 pm
Feedback so far: 
1) the document is a bit too erudite for most people. Yes, you're right; perhaps we can work on creating something that is more accessible without losing the grounding in theory and research, which is what will give any consensus-statement extra 'oomph'.
2) there is the question of how to hold providers accountable in terms of protecting rights and enabling responsibilities. This is very true and it relates to other, closely-connected projects of the Tuke Institute on patient-centred standards for HIV-services and patients' reviewing the effectiveness of their HIV-services online, plus one or two other projects. These are all linked up, so the Rights and Responsibilities project can only cover the ethics and rationale. I would like all the projects to work together to create change, which only participation by us as patients can achieve.
3) Another point is that the NHS is not interested in having real patient-participation. Very true! So, we need to show the reasons why it's important and, crucially, how it should be done. The NHS services need to be shown that it helps us as patients to get well and stay well, which is what a health-service should be about. All this is part of this project.

Thank you very much for the feedback to far! Please keep it coming.

Title: Re: Proposal for HIV Rights and Responsibilities policy-group: feedback wanted
Post by: Rupert Whitaker on October 22 2013, 03:29 pm
I notice in the etiquette guidelines ( that I should have introduced myself. Sorry not to have done so. To make it easy, here's a link: ( Basically, I've had HIV for a little over 30 years and have a long history of working in the field as an advocate, clinician, and scientist. I'd like to make some real change in health-services, as they have failed me and people dear to me, for poor reasons. I'm always open to contact, but I'm a little slow with emails (just so you know).

Title: Re: Proposal for HIV Rights and Responsibilities policy-group: feedback wanted
Post by: Rupert Whitaker on October 29 2013, 02:52 pm
Second round of feedback:

1. Does this framework look at hiv prevention?
Yes, it does, as this is crucial to the issue of rights and responsibilities.

2. The different healthcare structures in the world?
In part, as this relates to the issue of access and how people access services, which is an issue of rights as defined by the Universal Declaration of Human Rights

3. The uk had introcuded PbR?
I think this means Payment-by-results. This is not a direct area of interest except in that PBR does or doesn't help to create the best health-outcomes for people with HIV. My personal opinion is that it is a bureaucratic method that has little relevance to the needs of PWHIV.

4. Health inequalities?
Yes, as these are core to the issue of rights and responsibilities.

5. Government funding?
In part - it depends on what the funds are aimed for, but the issue that government needs to fund ways in which rights are protected and responsibilities are enabled is crucial to the framework.

6. Cost of treatment in different countries?
Yes, insofar as that relates to the right of access and equality of access.

Please keep these comments coming - and I'm happy to clarify. Many thanks again.