Who should be represented?

I said in my first post on the topic of replacing the PiA that I would blog further on aims and objectives. However, I’d first like to consider for whom these objectives are being undertaken. The disease group primary immune deficiency (PID) includes a vast number of conditions, all of which by have a non-external (ie. genetic) cause. Usefully, they can be summarised in five broad classes:

• B-cell disorders
• Combined T- and B-cell disorders
• Phagocytic disorders
• Complement disorders
• Diseases with current fever and inflammatory manifestations

(For more information on these see IPOPI.)

Whilst some of us require antibody replacement therapy, some of us have much more complex needs; some of our therapeutic needs are life-long and some are short-term; some of us have scheduled periodic therapy, some of us occasionally need immediate urgent treatment. Representing such diverse clinical needs is itself a massive challenge which needs consideration. Whilst condition-specific groups can keep issues on the agenda, we also have to ensure that this occurs without the exclusion of conditions unrepresented by groups.

But we are diverse beyond the range of conditions we have. We are male and female; young, middle-aged and older; from a range of racial and ethnic backgrounds; a mix of gender and transgender roles; gay, straight, bisexual and asexual; single, coupled, married, civilly partnered, divorced; parents, soon-to-be-parents and not parents; a range of positions on with systems and beliefs; different physical and intellectual abilities; and a mix of educational levels, class backgrounds and employment.

In short, we patients cannot be reduced to a single stereotype, and our principle aim has to be empowering all of the patients affected by the condition, putting them at the centre offer objectives. To do this, we have to walk a fine line between representing all those affected and purporting to represent those who wish to distance themselves from our objectives.

People with PIDs are clearly people who should be in “our camp”. However, there is another groups who deserve consideration, those with secondary immune deficiencies (SIDs), which have an external cause.

The best known of these secondary immune deficiencies (SIDs) is probably AIDS (caused by HIV), but other diseases include Good Syndrome, which is functionally the same as CVID, but which is caused by surgical removal of the thymus, and which is treated with IgG replacement therapy. Other causes of SIDs include chemotherapy for cancers, drugs and other diseases which affect organs and tissues related to the immune system, sometimes chronically, but sometimes just in the short term.

So for me a key question which needs to be carefully considered is whether or not we want to include SID patients from the organisation. However, at the same time, I would absolutely not want to usurp the work being carried out by AIDS and cancer charities who expertly support their patients.

I think we need to think about what language we choose to use (for example, in the naming of the organisation), especially since the information, support and representation needs of SID patients are in many cases identical to those of us with PIDs, but we need to think about how we those we represent and support, and those we do not. Who should we represent? Should we focus our name on immune deficiencies or primary immune deficiencies?

Another issue is how we represent, at the national level, the mix of needs in different regions, and for that matter how we define regions. Should each region be equally represented in some way, or do we focus on the four nations?

We are sufficiently complex and diverse that how we represent ourselves has to be given careful consideration. If we can’t address this fundamental need, we will be ineffective in many of our endeavours, such as being able to advocate on behalf of patients to government agencies.

I’d love to hear your ideas and opinions on this topic. Please, contribute to the discussion below or if you want to contact me privately, just add a comment and note you don’t want me to approve it!