Ontario Example of Access Problem

-Copy of a letter submitted to the College of Physicians and Surgeons from the Neutropenia Support Assoc. Inc. -Names have been omitted to protect confidentiality.


January 3, 2001

To whom it may concern,

On September 24, 2000, the Neutropenia Support Association Inc. (NSAI) received a phone call regarding the tragic death of a young Canadian woman who died the previous day in New York State. She was 21 years old.

Based on the information provided to us, we understand that she died o overwhelming infection associated with her severe chronic cyclic neutropenia. This had been a life long condition, presumed hereditary, as her sister has the same disorder and her father has a history of neutropenia. The cyclic neutropenia gene has been identified and is known to be a genetic disorder.

In 1997, the sisters started on long term treatment with Neupogen in Quebec. Treatment was somewhat effective since they received their injections every other day.

The patient moved to Windsor, Ontario in September of 1998 with a limited amount of Neupogen, which was provided by her Quebec doctor. Her family is under the impression that the patient had attempted to obtain Neupogen in Ontario and had been denied. When her limited supply ran out, we understand the patient’s sister, who was still living in Quebec, shared her Neupogen with the patient in Ontario. This unfortunately led to the hospitalization of the patients sister. Thankfully the sister survived.

A Windsor walk-in clinic, as well as the local hospital, saw the patient on many occasions. We have determined, by checking the London, Ontario computerized system, that she was not referred to any of the hematologists there. We assume all hematology cases in Windsor should be referred to London, as it is the closest proximity for these cases. We have been told that Windsor has not had any practicing hematologists for a couple of years. We left a message with the Quebec specialist asking if a referral had been made to an Ontario specialist when the patient moved in September 1998. There has been no response to our inquiry to date.

It appears that in Windsor, one physician prescribed Neupogen on at least two occasions, but he has not returned our phone calls to confirm his exact orders. We would like to question how she was to fill these prescriptions as her income was limited, she did not have insurance, and she was unfamiliar with the Ontario health care system. Also, as a young adult, it appears that she was completely unprepared to manage her chronic disease without assistance. Under her circumstances the specialized paperwork needed to be completed by a physician to access this expensive life-saving drug.

The Ontario Drug Programs Branch has no record of a Section 8 application to approve Neupogen. We also have inquired whether an incomplete application had been received by their department but not reviewed pending further information.

On August 19, 2000, the patient married in New York State. She died one month later.

We spoke with the New York State coroners’ office and they asked "if our socialized medical system failed this young lady". At this point we’re not sure.

Under what could be referred to as a Safety Net Program of the Severe Chronic Neutropenia International Registry, Neupogen is provided, if necessary, to all those who do not have insurance or have difficulty paying for Neupogen on a short term basis until Provincial applications have been processed. AMGEN Inc., the pharmaceutical corporation that manufactures and distributes Neupogen, has no knowledge of this young lady, nor of her family in Quebec. Prior to the advent of Neupogen (G-CSF) in the past decade, sadly, it was common for severe chronic neutropenia patients to die from complications of life threatening infections before the age of three.

The issues here are many. Families dealing with long term rare chronic diseases often do not know where to turn for help. The young lady and her family were unaware of the support network that existed. Had the N.S.A.I. been aware of this problem we could have provided advocacy, educational, and supportive care.

The point of this letter is not to lay blame, but to highlight the communication problems that exist in the medical system. In our opinion this may have been a preventable death and it is imperative that this be investigated to ensure this does not happen to someone else.

The Medical Examiner’s Office Ontario has explained that since the patient died, was cremated in New York, and laid to rest in Quebec, they do not have jurisdiction to examine the issues surrounding her care. The Ontario Coroner’s Office has said they recognize access issues and discrepancies from one province to another as well as a hospital program to another exist.

We need your assistance to examine the events leading up to the patient’s death, as many questions pertaining to her care remain unanswered.

We enclose the death certificate, the medical records in our possession recently obtained, and the next of kin letter dated October 3, 2000 to the Neutropenia Support Association Inc., giving us permission to investigate the associated medical circumstances before the patients death.

We will await your call to discuss this matter further. We realize it may take approximately 10 days for an investigator to be assigned to this file.

Thank you,

Sincerely,

Lorna Stevens

President, Neutropenia Support Association Inc.