MISSION:
To provide a voice for the tens of thousands of children/ adults born afflicted each year with infantile aphakic glaucoma, a development defect which left untreated, can cause complete blindness.
To provide a supportive community for patients, their families, friends, and caregivers.
GOALS:
- To secure a reliable long-term supply source of the necessary topical medication, that will control the intraocular pressures for the children and adults that are diagnosed with aphakic glaucoma.
Infantile Aphakic Glaucoma is a rare secondary glaucoma associated with poor control of intraocular pressure (IPO) which requires both surgical and medical treatment. Topical medication serves as the first approach. The sole pharmaceutical provider of Phospholine Iodide, a uniquely effective topical treatment has ceased production.
- To encourage research necessary to discover and develop advanced treatment options.
- To promote legislation to ensure adequate and appropriate future care for patients who are dependent on orphaned drugs.
HISTORY:
The Advocacy for the treatment of Infantile Aphakic Glaucoma is a loose confederation of patients, families, friends, and caregivers affected by Infantile Glaucoma, born from crisis. On May 1, 2021, Pfizer, the sole pharmaceutical provider of a drug vital for the treatment of Infantile Aphakic Glaucoma, ceased production, without plans for the future treatment of its patients. Individual pleas to Pfizer to help meet the immediate needs of its patients and secure an alternative long-term supply solution were ineffective. Encouraged by their common doctor, patients began to correspond sharing information and ideas. The first group action was to send notice to each individual Director of the Pfizer Board asking them to respect their ethical and moral duty to their patients. (See attached)
ORGANIZATION:
The group is organized horizontally. There is no management or hierarchical structure.
All work is voluntary. Members are free to participate at any level of involvement they wish, whenever they wish.
We have no bank account. We do not have dues, seek donations, or raise money. We will exist only if members find the collaboration and community useful.
RAISON D’ETRE:
This website was created to provide a bulletin board of information related to the advancement of the treatment of Infantile Aphakic Glaucoma.
We believe we are more effective and efficient as a group than we would be individually. We have no proof this is true, but anecdotal evidence suggests it may be so.
Some find it emotionally comforting knowing they are not alone in this challenge.
Please visit our how to help page to learn how you can assist us.
DISCLAIMER:
The group is not qualified, and therefore does not offer medical, emotional, or psychological advice. No reliance should be placed on the completeness, veracity or safety of any information on this website or that contained on any links contained or referenced on this website.
Group members, visitors and users of this site appear to share a common challenge, Infantile Aphakic Glaucoma. They appear to have varied backgrounds. There are no procedures to monitor or control content on this site, or membership or actions of the Advocacy Group. As such, no reliance should be placed on the accuracy or safety of any correspondence between or among the group.
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