(2017)

Joint Position Statement

Read the full position statement from the Canadian Association of Optometrists (CAO) and the Canadian Ophthalmological Society (COS).

Position Statement

November 2016

Summary

Retinitis Pigmentosa (RP) is part of a group of rare genetic disorders that cause slow but progressive degeneration of photoreceptor cells in the retina. RP symptoms typically begin in childhood with decreased night vision, followed by loss of peripheral vision, and can eventually lead to complete loss of vision. There is currently no cure for RP.

Since 1992, doctors in Cuba have offered a treatment for RP at an initial cost of just over $10 000 CDN. The Cuban treatment comprises eye surgery, ozone therapy, electric stimulation, and drugs. However, no independent, peer-reviewed studies have been conducted to date that demonstrate the Cuban treatment improves or stabilizes retinal function.

The Canadian Ophthalmological Society does not recommend the Cuban treatment for patients with RP due to the absence of objective, peer-reviewed evidence to support its efficacy, safety, and the fact that in some cases the treatment appears to have worsened patients’ RP symptoms.

Full Position Statement

Retinitis Pigmentosa (RP) refers to a group of rare genetic disorders that cause slow but progressive degeneration of photoreceptor cells in the retina. RP affects approximately 1 in 3500 Canadians.¹ RP symptoms typically begin in childhood with decreased night vision, followed by loss of peripheral vision, and can eventually lead to complete loss of vision. RP typically affects both eyes and ranges in severity from no visual problems in some families to early blindness in others. There is currently no cure for RP.

Since 1992, doctors in Cuba have offered a treatment for RP, which is available at a cost of $10 000 CDN for the initial treatment, plus $4900 CDN for each subsequent annual ozone treatment.² The Cuban treatment is open to anyone seeking treatment, both locally and internationally, and is comprised of the following:

1. Eye surgery: A flap of orbital vascular adipose tissue is inserted into a sclerochoroidal pocket at the temporal side of the eye. The theory behind the surgery is that it will increase blood flow, which will stabilize the progression of RP. However, our current knowledge, based on continued research, indicates that RP is a cellular disease, not a disease of blood circulation.² Several complications have been reported, including photophobia, strabismus with diplopia post-operatively, and inadvertent rupture or perforation of the scleral wall during surgery.^3,4
2. Ozone therapy: Post-surgery, ozone is administered to patients for 14-21 days, either rectally or via the bloodstream. The theory behind the ozone therapy is that it boosts antioxidants, which minimizes damage caused by lipid peroxidation. The rationale here remains contentious in the scientific community.⁵ In addition, ozone is an unstable molecule and may break down even before it is administered into the body. When ozone is infused into human blood, it produces reactive oxygen species which has the potential to cause an opposite effect, inducing oxidative stress and damage to the cell.⁶
3. Electric stimulation: Post-surgery, patients undergo multiple sessions of electrical stimulation of their head, neck, soles, and palms over a period of 14-21 days.⁷
4. Drugs: Post-surgery, patients are occasionally administered a mixture of antiplatelets, antioxidants, immunomodulators, vitamins, and minerals. Information on the precise dosages and names of the medications is not readily available and varies on an individual basis.³

Despite the fact that the Cuban treatment has been available for more than 20 years, its proponents have failed to demonstrate the scientific reasoning behind the treatment, and they have not demonstrated their techniques to any peers in the field outside of their own clinic. Furthermore, the results of pre- and post-operative outcomes have not been published in any peer-reviewed medical journal, nor have any longitudinal studies been conducted, even though the Cuban treatment has been offered since the early 1990s.⁷

The few studies on RP that have been performed report an absence of any evidence that the Cuban treatment for RP improves or stabilizes retinal function. In fact, according to a 1996 study conducted by Berson et al., in some cases, the treatment resulted in a 12.9% decline in patients’ visual fields.⁸

Given the lack of objective, independent, peer-reviewed medical studies, the Canadian Ophthalmological Society does not recommend the Cuban treatment for patients with RP. Furthermore, the Canadian Ophthalmological Society strongly advises that patients with RP avoid the Cuban treatment due to the absence of evidence to support its efficacy, safety, and the fact that in some cases the Cuban treatment appears to have worsened patients’ RP symptoms.

References

1. Foundation Fighting Blindness. http://ffb.ca/learn/eye-diseases/
2. Richard F. Tourisme médical. Hôpital sous les tropiques. Journal de la rue 2009;1^er août. http://journaldelarue.wordpress.com/2009/08/01/tourisme-medical-hopital-sous-les-tropiques/.
3. Parmeggiani F, Sato G, De Nadai K, Romano MR, Binotto A, Costagliola C. Clinical and rehabilitative management of retinitis pigmentosa: up-to-date. Current Genomics. 2011, 12, 250-259.
4. Berger RW, Haase W, Gerding H. Original papers: Ocular motility disorders after surgery for retinitis pigmentosa ‘Cuba-therapy’. Strabismus 1995;3(1): 13-20.
5. Copello, M, Eguía, F, Menéndez, S, Menéndez, N. Ozone therapy in patients with retinitis pigmentosa. Ozone: Science & Engineering. 2003, 25(3), 223-232.
6. Fishman GA. A historical perspective on the early treatment of night blindness and the use of dubious and unproven treatment strategies for patients with retinitis pigmentosa. Survey of Ophthalmology 2013;58(6):652-663.
7. Duquette J. Is there evidence supporting the Cuban treatment for RP? Institut Nazareth & Louis-Braille, 2010. http://www.inlb.qc.ca/recherche-publ/is-there-evidence-supporting-the-cuban-treatment-for-rp/.
8. Berson EL, Remulla JC, Rosner B, Sandberg MA, Weigel-DiFranco C. Evaluation of Patients with Retinitis Pigmentosa Receiving Electric Stimulation, Ozonated Blood, and Ocular Surgery in Cuba. Arch Ophthalmol. 1996;114(5):560-563. doi:10.1001/archopht.1996.01100130552009.

Report

2016

Read the full report on the valuation of uninsured ophthalmological services

Canadian ophthalmologists asked the Canadian Ophthalmological Society (COS) to provide guidance with regard to physician fees for services that are presently uninsured by provincial and territorial health insurance in many jurisdictions.

COS commissioned Health Intelligence Inc., an independent and well-respected health research firm, to conduct a study using recognized methodologies to determine fair market value for these uninsured services.

Reviewed August 2022

The Canadian Ophthalmological Society (COS) and its subspecialty society, the Canadian Cornea, External Disease & Refractive Surgery Society (CCEDRSS), are committed to excellence in ophthalmology. Excellence requires adherence to the highest ethical standards in all professional activities, including marketing and advertising. Our guiding principle is that the welfare of the patient is paramount. Advertising is ethical when it informs and educates the patient, when it does not confuse or mislead, and when it augments – but does not substitute for – a full conversation between the patient and the surgeon. There is no substitute for patient counseling, which can only be provided in a one-on-one setting.

COS and the CCEDRSS believe that, as a form of patient education, advertising is governed by the ethical guidelines and policies that cover patient education, including the guidelines of the Provincial Colleges of Physicians and Surgeons.

In particular, we agree with the American Academy of Ophthalmology (AAO) that good patient education:

• Is clear, accurate, up-to-date and thorough;
• Avoids misleading statements;
• Is not overstated and does not instill unrealistic expectations in patients; and
• Serves as a springboard for the oral conversation with the patient.

COS and the CCEDRSS would recommend that our members conform to these standards.

We also agree with and would recommend that our members give consideration to the joint statement of the American Academy of Ophthalmology, the American Society of Cataract and Refractive Surgeons (ASCRS), and the International Society of Refractive Surgery of the American Academy of Ophthalmology entitled Guidelines for Refractive Surgery Advertising Policy.

No set of guidelines can anticipate every possible advertising claim or expression. Ultimately, advertising is an ethical matter, and we expect our members to conform to the highest ethical standards in advertising as in every other aspect of their practices.

April 2012

The Canadian Ophthalmological Society’s (COS) expert working group on driving and vision standards provided recommendations on the visual acuity and visual field needed for safe driving in Canada.

These recommendations are published in Section 12: Vision of the Canadian Medical Association Driver’s Guide, 8th edition.

COS’s Vision Standards for Driving Committee revisited the vision section of the guide in April 2012 and indicated no changes were required at this time.

Background

When a patient is visually impaired, the physician should inform the patient of the nature and extent of the visual defect and, if required, report the problem to the appropriate authorities.

When minor visual defects are not accompanied by cognitive defects or neglect, most drivers are capable of compensating for partial defects. For example, most people adapt to the loss of an eye in a period of several months.

Recent studies indicate that experienced drivers can compensate for a loss of visual acuity if they are in familiar surroundings and they limit their speed.  In these circumstances, functional assessments are indicated.

Section 12 presents information about the recommended visual acuity and visual field needed for safe driving (section 12.2). Actual standards for these functions are set by provincial or territorial licensing authorities and may vary among jurisdictions as well as varying from the recommendations in Section 12, which are based on expert opinion.

Section 12 also presents information about other important visual functions that should be taken into consideration in determining fitness to drive (section 12.3) and recommendations for exceptional cases that require individual assessment (section 12.4).

It also provides further detail on recommended testing procedures (addendum 1), a list of medical conditions with increased risk for vision problems and a discussion of the use of vision aids in driving (addendum 2).

December 2009

National retinoblastoma strategy: Canadian guidelines for care

These guidelines are based on the best available evidence and expert opinion, and are intended to optimize patterns of clinical practice. They are not to be prescriptive or replace clinical judgement, nor restrict innovation. Healthcare professionals must always consider the needs, preferences, values, financial and personal circumstances of individual patients and work within the realities of their healthcare setting. Inequities in staffing, financial, equipment, and healthcare resources in different jurisdictions may impact upon physician and patient options and decisions. As the general nature of guidelines cannot provide individualized guidance for all patients in all circumstances, this document should not be used as a legal resource.