A combination of two therapies, Human Telomerase Reverse Transcriptase and Follistatin, were developed and applied outside the US. in BioViva’s lab to Liz Parrish, the patient and CEO of the company.
She seems like a regular person, a mother, who likes to hike and camp, and do all the things people normally do. In a way she is special, and on October 11, 2015 she took part in a Reddit Ask Me Anything, answering a range of questions about this pioneering study.
Here are her combined thoughts, and comments from several sources listed at the end:
I am proud to have taken part of helping millions of people even if it has bad results. I am happy to be patient zero. It is for the world, for the sick children and sick old people. My life has been good. I understand the risks but I research how people die and I am happy to say that today I do not know how I will die now, tomorrow or in the long future, I was up for a change.
BioViva is trying to help improve human health and wellbeing, and alleviate suffering. We are not trying to determine who should live or die. Everyone has a right to life without suffering.
I hope that we can, as a group, get the word out and talk to people to help them understand why we would want to cure disease. I also want people to know that gene therapy is not a scary thing. Without trying new therapies we can not hope to live long without disease.
We will go for breakthrough status in an acceptable disease state in the USA if we are successful. The biotech game is quickly changing. The people must demand their use of these treatments.
If you don’t look younger we have failed. Aging is one of the most visual diseases on the planet and includes things that we all know like wrinkles and gray hair, but also brain atrophy, muscle wasting and organ damage. When telomerase was induced in mice, hair regrew and it was youthful, but we do not know until we see results. Announcing the outcome when analyzing the results are completed.
The cost of these therapies is cost prohibitive at this time for most people. We are working to get those costs down so low and the efficacy so high that insurance companies will cover the therapies. If the results are good we hope to have something to the general public, that is cost acceptable, in 3-5 years. We need a lab that works solely to bringing those costs down. We would need about $1 – 1.5 million to build one lab to focus on this. We can expand as needed. I would love to do a crowdfunding but I do not know how to get good results with one and I think the price tag is high for that modality.
I was awake for the therapy and the procedure was documented by a film crew. In animal models both FST and hTERT have not increased the risk of cancer. We expect to see the same result on myself, and to that effect we are measuring all known cancer biomarkers. We take blood and tissue samples and they will be analyzed for all available biomarkers. There are no known neurological issues. You have little to no response to AAV (viral vector used in the therapy) the first time your body sees it. If you use the same vector twice you would want to bump up immunosuppression. I believe there will be many new ways to deliver genes in the future as well.
We do not suggest that people of childbearing age take gene therapy at this time. Much more understanding will be needed before that monumental step. That being said, hundreds of people are participating in gene therapies in the USA now – check out CinicalTrials.gov for more information.
We will see if scars are to be effected. Calvin Harley showed the extra cellular matrix was effected with hTert gene therapy (source). We will “de-age” progressively, as cures are developed.
We can not control the aging reversal to a specific year today, that will come in the future. It is hypothesized that you will not reverse in physical appearance to less than a young adult. We see this in mice as well. We are working on a one time treatment, but again it will be a long term experiment.
I hope that the image of gene therapy is changing. It seems to be. We are focused on gene therapies and believe in telomerase induction, but surely gene therapy and nanotechnology go hand in hand.
BioViva is a company that has the mission to get these treatments to those who want it. I would suggest always getting behind a company that shares your goals, who truly care about the world. This way we steer the ship together and many fears can be let go of.
Material combined from: