President's Letter

click to listen (728 KB)

Dear Friends,

We are excited to announce this year's annual meeting to be held in Detroit, Michigan, on September 15 and 16. We have planned what we think will be a highly informative program of great interest to you. Please look in this issue for biographical data on each of our speakers.

In addition to these presentations, we expect to demonstrate several screen reading software programs which may be of great help to those who have access to a computer. We will also demo our own website which now includes newsletters in natural voice for those who have a computer equipped with speakers. We hope over time to have every item on our website available in natural voice to provide as much help as possible for our low vision readers. We want to make sure that you know of this new feature.

Please also read the article, "The Promise of Avastin", which is reprinted with permission from the Association for Macular Diseases, Inc. We are very grateful for their generosity in allowing us to provide this news about their trial with Avastin which is causing quite a stir among physicians and their patients around the country. For the first time, we are hearing conservative doctors speak with hope about this new treatment.

Please also note the brief statement from a PXE patient who has been treated with Avastin and who has recovered sight as a result of this after two years of other treatments which had not been effective. If you have been treated with Avastin and would be willing to share your outcome, please contact the NAPE office.

I continue to hear from our members concerning the high cost of available eye treatments. We know that Macugen is now covered by Medicare. Lucentis and Avastin are not yet approved by the FDA and thus have not been reviewed by Medicare. You may wish to write your U.S. representative and senator urging that they support Medicare coverage of these medications. If you use Medicaid or know anyone who does, please understand that this program is controlled at the state level. You might wish to write a letter to your state representative, senator and governor urging that your state Medicaid program include the cost of these expensive treatments.

We can agree it to be a tragedy when a treatment that might help someone is not available because of its cost. In the NAPE Office, we do contact elected officials regarding this and other issues related to those who suffer from low vision and blindness. I hope you will join with us as I know that elected officials do respond when they hear from enough voters.

If you are uncertain about how to contact your elected officials, a good source of information is your public library. If that fails, you might check in your phone book to see if you have an AARP unit or a Lion's Club. Most representatives have their own website and typically can be found with a subject search using their names. Federal and state governments both have websites for their elected members so you can tap into your state government organization. If all this fails, please feel free to contact the NAPE office so that we can provide this information for you.

Finally, we are deeply grateful to members who have responded to our first request for donations since 2000. We ask those who can afford to help to send your gift in the envelope provided in the last newsletter issue. Thank you in advance for your support of NAPE's mission.

Hope to see you in Detroit!

Frances Benham, PhD
President