MacDonald Curran, former chairman of AMD Alliance, reminded attendees at the 2008 World Ophthalmology Congress of the need for eye care professionals to help AMD patients cope with the psychosocial impact of their disease.

Speaking from his own experience as an AMD patient, he shared the feelings of depression, helplessness and even suicidal thoughts that an AMD patient may suffer in the course of coping with their disease. Studies have shown, Mr. Curran said, that 73% of AMD patients experience depression.

Mr Curran related his experience at clinics in Hong Kong, Chicago, and London where all the doctors seemed to care about was his damaged retina. "I was out there in the corridor with many others feeling my life had completely and totally failed," he said.

When patients are hit with a life-changing disease such as macular degeneration, they are faced with questions about what to do with the rest of their life. "I felt absolutely useless. I felt ashamed. And I felt so many emotions detrimental to myself," Mr Curran said

Mr Curran said physicians should offer patients some assistance with coping with their disease, such as pointing them toward support groups and talking with them about possible psychosocial side effects, such as depression and Charles Bonnet syndrome.

I encourage all patients with AMD to seek out the support of others who have faced questions and challenges similar to those that they are currently facing. For those who are internet-active, an excellent online support group can be found at mdsupport.org.

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A new study finds that staphylomas associated with high myopia tend to worsen with age.

Posterior staphyloma is a protrusion of the posterior shell of the eyeball, and is a hallmark of pathologic myopia. The development of a staphyloma is accompanied by a stretching of the posterior fundus, resulting in various kinds of secondary disorders, including chorioretinal atrophy and choroidal neovascularization (CNV). Prevalence varies with race, with estimates of approximately 10% among Asians and 2% among North American whites.

This study aimed to study the characteristics of posterior staphyloma and how they change with age.

The investigators analyzed 209 eyes of 108 consecutive patients with myopia of at least -8.0 diopters at their Tokyo clinic. The participants were divided into two groups: younger than 50 years and 50 years and older. The long-term progression of staphylomas was analyzed in nine patients who were followed for more than 20 years.

The researchers found 90% percent of 209 eyes had a staphyloma. The prevalence was significantly higher in patients 50 years of age and older (96.7%) than in patients younger than 50 years (80.7%).

The prevalence of staphylomas greater than 2 mm in depth was also significantly higher in the older age group. Higher grades of staphyloma were associated with more severe myopic retinal degeneration. This indicates that not only the incidence of posterior staphyloma but also the depth of the staphyloma increased as the patient ages.

The staphylomas were classified into 10 types according to the criteria of Dr Brian Curtin. Older subjects had lower incidence of milder forms of staphyloma, and a higher incidence of more severe forms. More severe types of staphyloma are associated with more severe retinal degeneration .The long-term follow-up of 9 subjects demonstrated a progression from milder to more sever types with increasing age.

The researchers conclude that a staphyloma was present in 90% of the patients with high myopia, and the prevalence increased with age. Furthermore, it appears that staphylomas worsen as the patient grows older; progressing from shallower, milder lesions to deeper, more severe staphylomas.

WHAT IT MEANS TO YOU: Persons with high myopia are at higher risk of developing macular degeneration, and this risk increases with age. It behooves any high myope to get regular eye exams, especially as we grow older. If signs of myopic macular degeneration begin to appear, monitor your vision for symptoms of CNV. Fortunately, it appears that anti-VEGF drugs are as effective against CNV caused by myopic degeneration as they are against CNV caused by AMD.

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Pipex Pharmaceuticals has announced positive results from a double-blind, placebo-controlled clinical trial for the treatment of dry age-related macular degeneration with oral Zinthionein.

Zinthionein capsules (25mg capsules twice daily) were compared to placebo capsules twice daily on a 1:1 randomization scheme in a prospective, randomized, double-blind, placebo-controlled trial involving a total of 80 patients with dry age-related macular degeneration (AMD) for period of six months.

After six months, compared to placebo treated patients, Zinthionein treated patients demonstrated a highly statistically significant improvement in visual acuity (p < 0.0001), contrast sensitivity (p < 0.0001) as well as photorecovery time (p=0.0001), each of which represent carefully measured endpoints of global central retinal function that is compromised in AMD.

Zinthionein capsules (oral zinc-monocysteine) is a proprietary complex of zinc and cysteine.

WHAT IT MEANS TO YOU: Zinthionein is yet another treatment that is attempting to recover vision lost to dry AMD. Details are sketchy, and have not yet been published in the peer-reviewed literature. Therefore, we cannot put a great deal of weight in them. Nonetheless, it is very encouraging to see a pharmacologic treatment in the pipeline that appears to have the capability of restoring at least some vision lost to AMD.

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A new study finds evidence of systemic activation of the alternative complement pathway (AP) in patients with AMD.

Two lines of evidence have implicated inflammation in the development of AMD. First, drusen contain large amounts of material associated with inflammation and immune-mediated processes. Second are genetic studies that have found that variants in the complement factor H (CFH) gene are significantly associated with an increased risk for AMD in Caucasian populations.

Based upon the hypothesis that defective regulation of the alternative pathway of the complement system plays a role in the development of AMD, the investigators performed a comprehensive investigation of complement protein plasma concentrations in a cohort of AMD patients and controls. The findings were correlated with the genetic profiles of the patients.

The researchers measured the plasma concentrations of numerous complement activation markers in 112 patients with AMD and 67 control subjects without AMD. All participants were also analyzed for their factor H (CFH), factor B-C2 (BF-C2) and complement C3 (C3) genes.

All complement activation products were significantly elevated in AMD patients compared to controls. Logistic regression analysis revealed that complement activation markers Ba, C3d and factor D most reliably differentiated AMD patients from controls. Within both the AMD and control groups those individuals who carry the AMD-associated CFH genes had higher plasma concentrations of complement activation products, and conversely those individuals with protective CFH genes were associated with lower levels of activation products

The authors conclude that AMD is part of a systemic disease of the complement system. This study is the first to show systemic complement activation in AMD patients. The hypothesis of AMD being a systemic disease certainly raises the possibility of additional manifestations of the disease elsewhere in the body that have yet to be detected.

The discriminatory ability of complement proteins appears superior, or at least similar, to the discriminatory ability of genetic markers of complement genes for the prediction of AMD. Additional studies will be required to determine whether plasma concentrations of complement proteins could be useful as markers of AMD, either alone or in combination with genetic markers. Recently, genetic testing for the prediction of AMD was found to be 80%, which is similar to what this study found using protein markers of the alternative pathway of complement.

The researchers suggest that AMD patients may benefit from pharmacologic therapy directed at complement control proteins. Complement inhibitors may serve as a future therapeutic option for AMD.

WHAT IT MEANS TO YOU: If confirmed by other scientists, this study could represent a giant step forward in our understanding of AMD. The notion of AMD as a local manifestation of a broader, systemic disorder is very attractive. It helps explain why such disparate medical conditions as obesity and smoking, that on their face would not seem to have a direct bearing on macular health, are associated with AMD. In theory, any condition that promotes activation of the alternative complement pathway would have the potential to exacerbate AMD. This model of AMD also holds the promise of a medical therapy that can be directed against the root cause of the disease, rather than the consequences of it.

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He might learn about a new medical technique or device to aid people who have little or no vision.

Or, he might learn how someone with low vision might thread fishing line onto a hook, or measure the right amount of toothpaste for a toothbrush.

Shared knowledge is just the kind of support that Ford, who has macular degeneration, needs most.

"These people are full of great ideas," said Ford, of Lodi, Wisconsin, who is co-facilitator of the year-old group, serving Columbia County and part of Marquette County.

The other co-facilitator, Teresa Pena of Wyocena, Wisconsin, can list any number of things she's learned from the group.

For example, a nutritionist told the group about foods that promote better vision - and not just carrots.

"It goes way beyond carrots," she said. "It's also about green and yellow foods - and supplements are OK, but they're not as effective as getting the nutrition from food."

Most of all, she's learned that there are many people who lose some or all of their sight in adulthood.

"We always think we're unique," she said, "but we're not."

The need for a support group for people of Columbia County soon became apparent to Pena. That's why she and Ford worked with Judi Heiden, rehabilitation specialist with the state Office of the Blind and Visually Impaired, to start the support group. The group's first meeting was in June 2007, Pena said.

Although many of the speakers at monthly meetings offer practical advice, sometimes they just tell compelling and inspiring stories, Ford said.

Ford said he knows that there are many people with low vision in the area who may think of vision loss as "just part of getting older," and may not seek out assistance or companionship from others who have dealt with vision loss.

"I hate to hear that," he said, "because there are a lot of things that people with low vision can do. This group provides me with a lot of satisfaction. There are things we can do for people, and things that people can do to help themselves."

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AMD may be fundamentally different in the Asian population than in Caucasians, possibly because of underlying genetic differences between the two races, a researcher said at World Ophthalmology Congress in June 2008.

"AMD in Asians may have different phenotypic or genotypic patterns," Wai-Man Chan, FRCS, explained. "We may postulate that there may be two genetic pathways."

Caucasians, Dr. Chan said, develop drusen from complement factor H, then express HTRA1. Asians are less likely to have complement factor H so their pathway bypasses the drusen and proceeds along the genetic pathway to HTRA1. This makes it difficult to diagnose early or categorize them as high risk and thus puts Asians at a 10 times greater risk of developing AMD.

"Drusen are less common in the Chinese or the Asian population. ... Even if they can be found, they're usually very small," Dr. Chan said. "If we can't identify the high-risk group, it seems that we may miss some patients with the high risk factors."

In addition, wet AMD affects Caucasians and Asians differently. Asians have a 20% chance of developing polypoidal choroidal vascularization (PCV), which is difficult to diagnose without indocyanine green angiography (ICGA), a special test not routinely performed on AMD patients..

PCV responds much better to photodynamic therapy (PDT) than to anti-VEGF therapy. With PDT, many patients with PCV experience visual acuity improvement, Dr Chan said. Studies have found that anti-VEGF monotherapy can result in stabilization of vision and reduction of exudative retinal detachment in PCV patients, but has limited effectiveness in causing regression of the polypoidal lesions seen on ICGA. Even with PDT, recurrence is reported to be common. Therefore, periodic ICGA is recommended to detect to detect recurrence.

WHAT IT MEANS TO YOU: AMD is not a monolithic disorder. We often speak of "2 types" of AMD (wet and dry), but there may actually be many more. When geneticists talk, they use the term "phenotype" to describe how genes are being expressed in a person. There may be significant differences in how AMD is manifest ("phenotype") based upon underlying genetic differences ("genotype"). If there is sufficient genetic variation in key genes governing development of AMD between Caucasians and Asians, then we may see these differences clinically. This may require that clinicians change the way they think about AMD, and recognize that more phenotypic variation exists for AMD than previously thought.

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A new study using laboratory rats finds that Macugen exhibited little or no effect on choroidal neovascularization (CNV) development, whereas the steroid triamcinolone evoked robust inhibition of CNVs.

In this study CNVs were induced by laser trauma. Immediately after undergoing the laser procedure, the rats received intravitreal injections of Macugen, triamcinolone acetonide, or a vehicle solution (control group). After 21 days, fluorescein angiography was performed. The CNV mean diameters and thicknesses were then measured.

Mean CNV diameters were 10% to 13% smaller in Macugen-treated eyes and 43% smaller in triamcinolone-treated eyes compared with laser-only control eyes. The CNV mean thicknesses were greater in the Macugen-treated groups and significantly smaller in the triamcinolone-treated group compared with the control group.

The authors offer several possible explanations as to why Macugen was ineffective in blocking CNV development, including that the regulatory functions of VEGF may vary depending on where neovascularization is occurring and under what circumstances.

The investigators conclude that Macugen is insufficient to singularly prevent new CNV formation. Given the small but statistically significant effect of Macugen on CNV diameter and vascular leakage in this study, Macugen may exert a partial influence on the spread of neovascularization or perhaps on the regulation of vascular hyperpermeability.

Although triamcinolone effectively inhibited CNV in this study, its clinical role remains "controversial." Optimal dosing levels and frequency of administration have not been well established clinically, and corticosteroid therapy is associated with its own set of potential short- and long-term risks.

WHAT IT MEANS TO YOU: It has been suggested that Macugen may be useful as a long-term maintenance therapy because of it's longer duration of action and enhanced safety profile. However, this study casts doubt on the ability of Macugen to prevent the onset of CNV, as opposed to its ability to suppress the activity of an existing lesion, which is well documented. One must always be cautious when extrapolating from animal studies to humans, but based upon the current study there is good reason to believe that a selective anti-VEGF inhibitor such as Macugen may be ineffective in preventing the onset of CNV. It would appear that the best strategy for preventing CNV remains to be determined.

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A new study finds that choroidal neovascularization (CNV) secondary to non-age-related macular degeneration (AMD) causes treated with Avastin responded favorably and similarly, despite varying underlying etiologies.

The investigators performed a retrospective analysis of eyes that received intravitreous Avastin (bevacizumab, 1.25 mg), for subfoveal non-AMD CNV at a referral-based retinal practice. Repeated treatment with Avastin occurred if there were signs of persistent or recurrent exudation. The main outcome measure was visual acuity (VA).

The study included 39 eyes of 36 patients with subfoveal CNV secondary to histoplasmosis (n = 12), angioid streaks (n = 11), myopic degeneration (n = 10), or other causes (n = 6). The median baseline VA was 20/60. The mean follow-up was 58.8 weeks, and the mean number of injections per eye was 3.4. After 3-months of follow-up, the median VA was 20/30. At last follow-up, the median VA was 20/40. There was no correlation between underlying diagnosis and VA change during follow-up.

The authors state that CNV from various non-AMD causes all responded similarly to Avastin treatment. They suggest that based upon their results, it may be valid to extrapolate our experience using Avastin to treat AMD to using Avastin in the treatment of CNV arising from other causes.

WHAT IT MEANS TO YOU: Many diseases other than AMD have the potential to cause CNV, but it remains unclear how effective Avastin and other anti-VEGF drugs are in combating CNV from these conditions. All of the major randomized clinical trials investigating the effectiveness these drugs have focused solely on AMD. Nonetheless, clinicians continue to use these drugs "off-label" to treat CNV from other causes, such as myopic macular degeneration. Research is needed to help guide clinicians in the use of these drugs to treat diseases other than AMD. Such studies are beginning to emerge, but, like the current study, they tend to be small, retrospective case series. However, the current study, with 39 eyes, is the largest that I am aware of. The good news is that anti-VEGF drugs, such as Avastin, appear to work as well for these diseases as they do for AMD. Indeed, the authors of the current study go so far as to say "extrapolation of experience from AMD-related CNV to non-AMD-related CNV cases may be valid." This is music to our ears.

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Preliminary research shows encouraging results with transplantation of fetal stem cells in patients with retinitis pigmentosa (RP) and dry AMD, according to a report in the August issue of American Journal of Ophthalmology.

Although they have different causes, both RP and AMD lead to destruction of retinal photoreceptor cells. In theory, if the damaged photoreceptors can be replaced with new cells that connect with the remaining host retina it may be possible to restore visual function.

Investigators performed implantation of fetal retinal cells together with their attached retinal pigment epithelial cells in ten patients with vision of 20/200 or less: six patients with RP and four with the dry AMD.

Follow-up testing 5 years after implantation showed visual improvements in seven of the ten patients: three of the patients with RP and all four patients with AMD. Although vision remained in the "legally blind" range for all patients, the gains in vision were significant and measurable.

"This clinical evidence shows the promise of our method to alter progressive vision loss due to incurable degenerative diseases of the retina," comments lead author Dr. Norman Radtke.

Much further research will be needed to determine the potential for retinal transplantation to improve vision in patients with these diseases. "Retinal implants that combine retina and retinal pigment epithelium demonstrated an apparent ability to integrate with host retinas and to re-establish the visual pathways interrupted by disease," adds Dr. Radtke.

WHAT IT MEANS TO YOU: Currently, no effective treatment exists for the recovery of vision loss to degenerative retinal disease. But progress is being made. A clinical trial of gene therapy in Leber congenital amaurosis has recently reported good results. Neurotech has started phase II clinical trials for ciliary neurotrophic factor for RP. Multiple centers are actively pursuing development and use of an artificial retina. The current study demonstrates promising results using fetal stem cell implants. There is reason to be optimistic that it will soon be possible to restore vision lost to these blinding diseases.

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A new study finds good visual outcome following cataract surgery in patients aged 90 and older.

A retrospective case series of 78 patients aged 90 years or more (average age: 91.8 years) undergoing cataract extraction between 2000 and 2006 was performed. A comparison of visual outcome between patients with various ocular conditions, including macular degeneration and glaucoma, was performed.

The most common comorbidities were dry AMD (47.4%) and open-angle glaucoma (24.4%). No ocular comorbidity was found in only 22 patients (28.2%).

Overall visual acuity (VA) improvement was 68%, whereas unchanged and worsening rates were 16% each.

Almost 17% of patients achieved uncorrected VA of 20/40 or better at day 7, compared to 7% preoperatively. Final VA of 20/40 or better was achieved in 25% of the patients. AMD patients showed less improvement in VA than patients with glaucoma or no comorbidity.

Overall, approximately 70% of very elderly patients can achieve VA improvement following cataract surgery, which rises to 82% in those without ocular comorbidity. Although patients with AMD show less improvement, 62.5% can still enjoy improvement in VA.

WHAT IT MEANS TO YOU: Several recent studies have demonstrated convincingly that patients with AMD can enjoy significant vision improvement following cataract surgery. The current study reminds us that patients with AMD often experience less improvement in their vision than other patients. Nonetheless, even among patients over age 90 with AMD, over 60% will still experience some improvement in their vision. However, we are also reminded of the recent literature review that found a higher rate of progression of AMD among patients who have undergone cataract surgery (see our July 2008 newsletter). Therefore, patients should only consider having cataract surgery if their vision is sufficiently impaired by cataract that the risks associated with having surgery are outweighed by the expected improvement in their vision after surgery.

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A new study published in the August 2008 edition of the journal Retina finds that Macugen combined with the antibiotic moxifloxacin (Vigamox) appears to be effective in the treatment of wet AMD. Fluoroquinolones, such as moxifloxacin, are broad-spectrum antibiotics effective against a wide range of bacteria. They are frequently prescribed to guard against infection following cataract surgery. Studies have found very low rates of infection following intravitreal injection of anti-VEGF drugs, such as Macugen, but by combining an antibiotic such as Vigamox with the anti-VEGF agent, the risk could theoretically be reduced further. Furthermore, in addition to killing bacteria, fluorquinolones are also known to have anti-inflammatory properties. Doctors have used anti-inflammatory steroid drugs to treat macular degeneration. Unfortunately, steroids have many serious side effects, including cataract and glaucoma.

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An innovative campaign by broadcasters has dramatically increased public awareness of Audio Description (AD), according to research released by Ofcom . The Royal National Institute of Blind People (RNIB) welcomed today's report. The research found that more audio described programs would increase usage among blind and partially sighted people, and that it improves their understanding and enjoyment of TV. RNIB now calls on Ofcom to review and recommend an increase of AD programming and hopes that broadcasters build on the success of their campaign by audio describing a wider choice of AD programs. Audio description is an additional commentary that describes body language, expressions and movements, making the story clear through sound. It can transform the enjoyment of TV for people who have difficulty seeing what's happening on the screen.

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"Going Blind" is a film-in-progress by award winning New York documentary director Joseph Lovett. Lovett and associate producer Logan Schmid visited Hong Kong recently to show excerpts from the film at the World Ophthalmology Congress and to hear first hand from leading researchers and clinicians on scientific advancements that might be included in their film on vision loss. Lovett started work on "Going Blind" while looking for answers about how to deal with his own vision loss from glaucoma. "I wanted those who have dealt with vision loss... to have a chance to share their remarkable stories of staying connected in the world with the many tools that are available to them," says Lovett. "I also want the film to encourage sighted people who take their vision for granted to understand the importance of regular eye exams. No one should go blind from neglect. And everyone with severe vision loss should know about and have access to low vision therapy, rehabilitative services and mobility training."

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It has a lot of lycopene and beta-carotene. Lycopene helps prevent degenerative ailments, such as macular degeneration and prostate problems. Beta-carotene is an antioxidant that protects you against free radicals. Your body also converts beta-carotene into vitamin A, which is good for you. Anyway, according to the U.S. Department of Agriculture, letting your watermelon sit uncut at room temperature for a week or so increases its levels of lycopene and betacarotene. Tests showed that lycopene content rose by 20 percent and beta-carotene went up by 100 percent. Of course, once you cut the melon you have to refrigerate it.

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ArcticDx Inc has completed a license agreement with Cambridge University for a single nucleotide polymorphism (SNP) located in the complement C3 gene that is a demonstrated predictive indicator for the genetic diagnosis of AMD. The license provides ArctixDx with rights to incorporate this SNP into a diagnostic test for AMD they are developing. President and CEO of ArcticDx, Greg Hines said: "This will be the first time that clinicians will be able to diagnosis the condition before symptoms arise. This provides the opportunity for targeted patient education and routine eye examinations that offer early detection and disease management. Macular Degeneration is a disease that can be arrested but it is not reversible. It is important to offer earlier treatment regimens that may arrest the disease before significant vision loss occurs."

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Lighthouse International has announced that they are developing a new add-on software tool to help people with impaired vision view more Web pages. The free, open source program is the first to allow people with moderate to severe vision problems to view Web pages as the site creators intended. Known as LowBrowse, the program allows people to read text on pages altered to meet their needs. The free program works with Mozilla Firefox on Windows, MacOS, and Linux. It will be available by the Fall of 2008. Other programs help blind people access the Web, but LowBrowse is geared for those with some vision. "This technology enables all the text on a Web site to be presented in the same readable format -- size, color, font and spacing -- regardless of which page is being viewed," said Aries Arditi, senior fellow in Vision Science at Lighthouse International.

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