December 21, 2015
Story by Gregory Kennedy; Photo by Dale MacMillan
For months, Anne Goltz lived with the aches and pains of what she thought was a stubborn flu or virus that refused to go away.
“I didn’t know what was going on,” says he 70-year-old Edmontonian, who finally got some answers after her family doctor referred her to Alberta Health Services’ (AHS) new Glomerulonephritis (GN) Clinic at the University of Alberta Hospital.
“They searched and searched until they figured it out,” says Goltz, who underwent blood tests and a biopsy to discover she was living with a rare kidney disease called ANCA vasculitis, a form of GN.
“I have an awesome team here, from my nurse to pharmacist to my doctor,” says Goltz. “They started me on medication and, within four months, I was in remission. I don’t have any aches and pains any more. The care I received was A-plus-plus-plus.”
Like Goltz, more Albertans living with rare kidney diseases can now achieve remission and potentially ward off the need for future dialysis or kidney transplant thanks to the teamwork of this new specialized clinic.
The new GN Clinic, under the umbrella of the Northern Alberta Renal Program (NARP), is making great strides in caring for people living with GN. The condition causes inflammation of the tiny filters in the kidneys (glomeruli) that remove excess fluid, electrolytes and waste from the bloodstream through urine, and which can lead to kidney failure as a result.
“We’re creating a single point of access for all patients in the region with these rare diseases that allows us to be able to match patients with state-of-the-art multidisciplinary care and ongoing clinical trials,” says Dr. Neesh Pannu, one of two nephrologists who serve as medical directors, along with Dr. Ainslie Hildebrand, a GN specialist and researcher who recently joined AHS.
“There are only a handful of GN experts in the country,” adds Dr. Hildebrand. “We’re creating a model for GN care we hope can be translated to programs in cities across Alberta and Canada.”
Often caused by an overreaction of the body’s immune system, GN is a serious illness that can be life-threatening and requires immediate treatment. Also called glomerular disease, GN can be acute (a sudden attack of inflammation) or chronic (coming on gradually). GN often occurs in otherwise healthy people; however, it can be associated with medical conditions such as lupus, certain infections, cancers or even drug exposures.
GN afflicts about one in four patients with end-stage renal disease. While there is no cure, the disease can be put into remission through the use of immunosuppressants, a class of drugs that reduce the strength of the body’s immune system in order to protect the kidneys and organs.
Severe or prolonged inflammation associated with GN can damage kidneys to the point where dialysis or a transplant may become necessary, so timely diagnosis and treatment are key. Even with treatment, it can take a few months to a year to achieve complete remission.
The GN Clinic’s goal is to improve early detection and treatment; prevent progression of disease and the need for renal replacement therapy; reduce the frequency and severity of hospitalizations and emergency department visits; and improve the patient experience through education and comprehensive care plans.
The clinic, which launched a year ago, now serves 80 patients and is growing by about 10 patients per month — people who will be carefully monitored and followed for life.
“This clinic is still in its infancy; we expect that number to grow as word gets out,” says Dr. Hildebrand.
Taking a multidisciplinary approach, the GN Clinic’s team also includes three nurses, a pharmacist, a dietitian and a social worker, as well as clerical support.
“The role of our nurses and pharmacist are critical here,” says Dr. Pannu. “As you can imagine, these are complicated diseases, with complicated concepts, and our nurses and pharmacist have developed a comprehensive educational package that they share with patients as they discuss both the diseases as well as the treatments and their side effects. That’s a huge service that this clinic provides — and it helps our patients to adhere to a complex treatment regimen.
“We’re also hoping to provide better service for patients outside of Edmonton,” adds Dr. Pannu. “This clinic will serve all of northern Alberta, from Red Deer north, so I think that, particularly for patients in Grande Prairie and Peace River, where there may not be local specialty care available, we can provide them with an important point of contact for monitoring.”
The fact GN patients now receive one-stop care of the highest standard at a single location also means research into improving best practices will now be easier, says Dr. Hildebrand.
“Our new clinic offers a platform for research — a central point of access for future clinical trials in which patients can gain access to novel therapies — and will definitely help us to learn more about caring for this condition,” she adds.