What is macular degeneration and who does it affect?
Macular degeneration is a disease that affects the retina in the eye. Damage to the retina that occurs over time, eventually causes a loss of central vision. If you imagine looking straight ahead, you would literally have a black dot in the middle of your eye and would only be able to see peripherally.
It mainly affects people who are growing older and as an increasing amount of people are living into their 80s, 90s, and 100s, this disease is becoming far more prevalent.
It is also sometimes referred to as age-related macular degeneration, but its formal name is macular degeneration.
There are two forms of macular degeneration: the wet form and the dry form. The dry form is less challenging as it affects a smaller number of people and the disease progression is far slower.
Once the wet form reaches a certain stage of progression, it begins to cause vision loss more aggressively.
How quickly does vision loss occur?
It is hard to say exactly how long it takes for a person to become legally blind, but I'd say that it generally happens around ten years after early diagnosis. However, it does depend on exactly when a person is diagnosed.
The best thing people can do is to seek out annual dilated eye exams. An ophthalmologist or a well-trained optometrist needs to dilate the eyes and use the appropriate diagnostic tools to ensure that they are making an accurate observation of the disease.
Why are a growing number of people being affected by age related macular degeneration (AMD)?
As people around the world live longer, macular degeneration is increasingly being diagnosed among people in their 80s, 90s and 100s. One can have early-onset macular degeneration, which can affect people in their 40s and 50s, but this is much less frequent.
When you Google “macular degeneration”, you may come across pictures of something called drusin, a substance that accumulates in the eye. Drusin collects in the middle of the eye where it causes significant central vision loss.
There are many therapies available to treat this and there have been incredible advances in the last five years. Also, I dare say there will be many more advances in the next five to ten years.
Please can you outline the mission of AMD Alliance International?
The organization was originally named “AMD (Age-Related Macular) Alliance International” (AMDAI), but we are in the midst of rebranding ourselves to “Macular Disease Alliance International” because there are macular diseases aside from AMD, that are causing significant problems for people.
The more we research AMD, the more we are finding other macular diseases that can be treated effectively.
AMDAI was founded about fifteen years ago by a group of individuals headed up by Don Curran. Don was a major airline executive who developed macular degeneration. Once he was diagnosed, he received the finest care because he was an airline executive who flew all over the world.
At that time, however, none of the procedures were very effective at helping with macular disease and Don has now lost the majority of his vision.
Now, he is obviously on very appropriate medication, but his condition was diagnosed while he was in his early 60s. Today, some fifteen years later, he continues to work to spread the word about macular degeneration and to talk about the newest and latest therapies.
That was really how AMDAI was formed; it is an organization that has been put together by individuals who were affected by the disease and are now joined by pharmaceutical companies and organizations like mine.
I am the president of Lighthouse Guild International here in New York City. I'm the Chief Operating Officer of this large vision organization in the United States.
Amongst our members, we have the RNIB in London, along with 72 other vision organizations across the world who have come together with individuals like Don Curran who believe there is power in the consumer.
We deal with consumers every day in my organization and we work hard to make sure they understand what macular degeneration is and to help them get the most up-to-date therapies available, which is a really important part of our mission.
We want to make sure that we bring knowledge, hope and health to people affected by macular disease. For example, in Japan, AMDAI runs group therapy sessions to help people understand some of the latest information that's available.
AMDAI also supports organizations in the United States and in Great Britain that are trying to bring the latest information to the table.
We work with pharmaceutical companies to make sure that the latest information on the most recent pharmaceutical agents is available to all clients and patients around the world.
(From left to right): Ms Lesley-Anne Alexander CBE, Royal National Institute of Blind People, Mr Danny Gleeson, Guide Dogs for the Blind (with Dylan the Guide Dog), Dr Alan Cruess, AMD Alliance International, Dr Keith Gordon, AMD Alliance International, Mr Michael Valenzia, Macular Society, Mr Dennis Lewis, Macular Society, Mr Mark Ackermann, AMD Alliance, Prof Ian Banks, European Forum Against Blindness (EFAB).
Currently, what are the main challenges of tackling AMD?
As you sit in London and I sit in New York, it’s easy to assume that consumers are well informed, but people around the world who do not have the opportunity to read the London or New York papers everyday, do not receive the most up-to-date information.
AMDAI's goal is to make sure that every individual on this earth who is afflicted with macular disease has access to this information. Whether it's developed countries or third world countries, we work with all of our members, to make sure everybody's getting the most up-to-date information.
The vision loss people suffer can be very gradual and it is sometimes hard to pick up on, so that's why we encourage annual dilated eye exams. We want to make sure people get an in-depth exam of their eyes each year, so there is record of the condition of their eyes.
As people age, the retina changes naturally, but we need to make sure doctors have good records of that, so they can monitor the changes that take place.
If the annual eye exam reveals a problem, a patient can be treated with various different therapies. However, the inadequacy of reimbursement for those treatments is something we're also working on.
We were in London a few weeks ago speaking to members of Parliament about the need to get appropriate coverage for all of the procedures that are available to ensure vision is not eventually lost.
The most important message is probably that one does not have to lose their vision from macular disease. When appropriately treated, the medications available today really help to slow down progression of the disease.
Although we have not yet found a cure, we can certainly slow down progression to the point where one should not become legally blind, except in the most severe cases.
Only a few years ago, that was not the case and we could not have made that statement to consumers around the world today.
I would like to impart the message that early detection and early treatment do really mean that people can continue maintaining their vision and a high quality of life. People can keep their jobs, continue driving and doing all the other things that are important to us.
AMD Alliance International commissioned a ‘Global Atlas’ to identify the costs and burden of AMD. What were the main takeaway points from this study?
The biggest takeaway is that there is a huge disparity around the world. We are seeing a very big difference across the globe in the kind of treatment that is available and how it's reimbursed, whether it's paid for by government insurance programs or third party insurance programs.
This atlas has given us the opportunity to make sure that more countries get information about the different medications that can be used.
There are different price points for those medications - some are very expensive, some are more reasonably-priced, even though the efficacy is almost the same.
I think that with the changes that are taking place in treatment now, as well as those that are going to occur in the next year or two, it will become far more cost-effective to treat patients and our goal at AMDAI is to bring some unanimity around the world in terms of making sure that governments understand that there are ways of slowing this disease down.
In the long run, that would save governments’ money. For example, if you are able to give the appropriate medication to an individual with AMD who's still working for a living, they're going to be able to keep their job and not have to go on public assistance, whereas if that person becomes legally blind and can't work or drive, it's going to cost the government a lot more to pay for all the challenges unemployment presents.
The global atlas showed us the disparity in two areas; firstly, in early detection of the disease and secondly, in treatment of the disease. In particular, we have a lot of work to do in the third world countries to make sure there is appropriate detection and treatment of the disease.
As newer and more aggressive approaches to treating AMD are being introduced, we're seeing some countries such as European countries speed ahead in terms of approving drugs. They are even quicker than the United States.
Right now, you can get some of the most up-to-date treatments in the United Kingdom, Germany and some other countries in Europe even more quickly than you can in the United States and Americans are flying over to Europe to benefit from these new procedures that have been made available.
What advances have been made in terms of treatments over recent years?
The main advancement probably took place a number of years ago with the discovery and approval of an anti-VEGF treatment called Lucentis, which was the first drug approved for treating AMD.
Now, another anti-VEGF called Eylea is being produced by two major pharmaceutical companies and has been approved for use in a number of countries. It's a bit less expensive than Lucentis, but it has taken longer to receive approval in some countries. However, that's changing very quickly and over the last five years, these two drugs for AMD and some other macular diseases have quickly changed how we treat macular degeneration.
These medications are injected into the eye, which may be uncomfortable for some people to think about, but what's changing now is the frequency with which this has to be done. Early on, even until this year, they needed to be injected up to once a month, but now new formulations are being created that are reducing the need for injections to be this frequent.
Once the medication is injected directly into the eye, people maintain their vision at the level it was when they started the drug. In a few cases, vision actually improves a bit, but for the majority of people, vision is maintained at this level.
For those affected by AMD, that's a miracle and it's appreciated more than you can imagine.
One challenge I haven’t mentioned yet is the psycho-social aspect of macular degeneration. The psychological effects of losing your vision are enormous and getting people to work with counsellors, psychiatric social workers, and other appropriate professionals, particularly in groups of patients with AMD, can help people to understand that the sooner they start medication, the more stable their vision will become and the longer they will be able to maintain their vision.
These drugs really are a game-changer and have done an enormous amount of good in all the countries where they’re available. Furthermore, combination therapies are being introduced that allow the use of anti-VEGF treatments with some other treatments, so that less injections are needed.
For example, there's a very new laser treatment that the Oraya pharmaceutical company has combined with anti-VEGF and this has drastically reduced the frequency at which injections need to be given.
The anti-VEGF treatments will continue to improve alongside treatments such as the Oraya procedure, but now, our attention is also turning to cell and gene therapies to literally regenerate some of the lost portions of the macula and retina.
So, next on the horizon is the possibility of using gene and stem cell therapies to restore some of the lost vision, which is very exciting for us, clients, patients and their families.
We know that companies are working on this and that the government resources being put into this are certainly going to be worthwhile in the long run, because the more we can prevent people’s vision loss, the more likely it is that they will be able to continue working and remain valued members of our society.
Do you think it will ever be possible for the anti-VEGF treatments to be delivered in another way, i.e. not through an injection into the eye?
I've been over 35 years in healthcare, I've learned never to say never! That's not on the horizon immediately, but certainly I know there are people working on other forms of injection and other forms of introducing the drug.
But right now, the most efficacious is injecting it right into the eye, and while that sounds uncomfortable, and I've never experienced it, those who have it, even on a monthly basis, say it's not nearly as bad as it sounds, and knowing that it is maintaining their vision makes it worthwhile.
Where can readers find more information?
Our website, www.amdalliance.org has links to our 72 member organization websites and provides a wide array of information. Our website www.lighthouseguild.org and, of course, the websites of major pharmaceutical companies, Novartis and Bayer, are also good information sources.
About Mark Ackermann
Mark Ackermann has more than thirty years experience in non-profit management. His background includes senior management positions in healthcare and educational organizations.
Mr. Ackermann currently serves as the Executive Vice President and Chief Operating Officer of Lighthouse Guild International and President of a number of Lighthouse Guild Subsidiary Corporations. Lighthouse Guild is the leading not-for-profit vision + healthcare organization, with a long-standing heritage of addressing the needs of people who are blind or visually impaired as well as those with multiple disabilities or chronic medical conditions. Lighthouse Guild was formed as a result of a merger which Mr. Ackermann was influential in accomplishing between Lighthouse International and Jewish Guild Healthcare for the Blind. Prior to his current position, Mr. Ackermann served as the President and CEO of Lighthouse International.
Prior to joining Lighthouse International, Mr. Ackermann served in various senior management positions at Saint Vincent’s Hospital and Medical Center beginning in 1983, and held the position of Chief Administrative Officer of the hospital’s successor corporation, Saint Vincent’s Catholic Medical Centers of New York (SVCMC) until June 2007. He was also President of the SVCMC Foundation.
From 2007 through 2009, Mr. Ackermann served as the Special Assistant to His Eminence, Edward Cardinal Egan and Executive Director of the Office of the Papal Visit for the Archdiocese of New York. In this capacity, he was responsible for all aspects of the Pastoral Visit to The Archdiocese of New York by His Holiness Pope Benedict XVI in April 2008. He coordinated the planning and execution of eight major events in and around the City of New York during the Holy Father’s visit. Mr. Ackermann coordinated all federal, state, and city agencies involved in the visit as well as the various offices of the Vatican and the Archdiocese of New York. After the Papal visit, Mr. Ackermann continued to work on a myriad of special projects for the Cardinal, related to the operations of the Archdiocese of New York.
Mr. Ackermann holds a Bachelor of Arts Degree from the Catholic University of America and a Master of Science Degree in Healthcare Management from New York University. He has served as an Adjunct Professor in the Graduate School of Management and Urban Professions of the New School University, as well as, a Clinical Instructor in the Robert F. Wagner Graduate School of New York University, New York. He has been a member of the Government Affairs Committees of the Greater New York Hospital Association, the Hospital Association of New York State, the Catholic Healthcare Association (CHA) and the American Hospital Association (AHA). He has been active in the Association for Healthcare Philanthropy (AHP) where he has served on the national Board of Directors and as Chairman of the Board of Trustees of the AHP Foundation. He has spoken on healthcare management issues at conferences sponsored by the AHP, the CHA, the AHA, the United Hospital Fund, the Association of American Medical Colleges, the National Science Foundation, the U.S. Department of Health and Human Services, the Healthcare Financial Management Association and the National Managed Health Care Congress.
He currently serves on the boards of directors of: The Vision Serve Alliance (St. Louis), The Age Related Macular Degeneration Alliance International (London); Vision20/20 USA (New York), The Usher III Initiative (Chicago), the Same Sky Foundation (New York), and the Visionary Media Group (New York).
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