Making Research ‘More Human’
M. is the mother of two children living with HIV who have taken part in multiple research project over the years.
She needed to get a few things off her chest.
Because of you, your passion, your hard work, years of studying… my children can live.
Because of you, they can play, be healthy and will probably enjoy a long and healthy life.
Because of you, they only take 3 pills a day, not 30.
Because of you, if they want children, big chance my grandchildren won’t be HIV+.
Because of you, as I’m writing this, they are smiling and playing in the yard, carefree.
Because of you, we have hope! Hope for a cure! Hope things can only get better!
As I thank you, I would also want you to know what it feels like to be on the other side of research:
Please share your findings with me. In terms I understand! Make them accessible, most of us don’t have access to scientific journals.
Please share the good and the bad news so I know what to look for in my kids.
Please say thank you to the participants when you are presenting… but remember that we are not present so it’s somewhat meaningless to us.
Please remember, while you may find it time-consuming, useless or too expensive, that sharing the results of your research make our children and us (parents) feel like we contribute and are part of this important work, and feel empowered.
Please, if I share with you my concerns about your research and clinical trials, don’t label me as difficult! Hear me out and explain how my concerns will be shared, addressed and how you plan on making things better.
Please, help me teach my children about informed consent and take your time to involve them in the decision to be part of your research or not.
Please, if people living with HIV and their families give you the gift of their time and their bodies, and we are the ones living with this disease every day, can we be involved in what matters to us and help improve our quality of life?
Because in the end, it’s not about a career, a great research paper or a very interesting conference… it’s about US, our health, our bodies, our lives!