Battle with self and the high cost of treatment

Elsie Nandwa, 20, has been sickly since childhood. Trips to hospitals have been the story of her life.

Nandwa is battling a flurry of autoimmune disorders. This is a condition that occurs when your immune system mistakenly attacks and destroys healthy body tissue. It is incurable but manageable.

Her ailments have left her so stressed, she had to be referred to a psychiatrist by her rheumatologist. She admits, “I suffer from anxiety disorders.”

The longest she has been admitted was in 2019, from July 11 to August 26 at a Nairobi hospital. Her woes were multiplied when she couldn’t promptly raise the bill of Sh569,000. She was detained for two weeks, during which the bill kept rising by Sh6,500 per day.

“I was so stressed I cried,” she says. She was to be taken care of by her mother’s insurance, but its limit had been depleted.

Nandwa’s mother, Neriah Shisia, is a primary school teacher. “It was hectic,” she says. “NHIF paid Sh48,000 that catered only for the bed, my private insurance, paid Sh272,000 that included an ex-gratia of Sh150,000. My employer, TSC, chipped in with Sh150,000. I took a soft loan and well-wishers also assisted.”

The high cost of managing the conditions of patients living with autoimmune disorders is a source of concern for rheumatologists.

Dr Fred Otieno, who practises at the Aga Khan University Hospital in Nairobi, says, “Patients with autoimmune disorders do not fall under categories of patients who are insured by the National Hospital Insurance Fund.”

Dr Eugene Genga, a lecturer at the University of Nairobi, uses the analogy of arthritis to show the dilemma of patients. “The drug Rituximab can be used for rheumatoid arthritis and cancer. Lymphoma is blood cancer. If I were to get rheumatoid arthritis, the government would not pay for me. If I were to get lymphoma, the government would pay.”

The specialists say other than cancer, patients with kidney disease have special consideration from the NHIF. In contrast, Dr Otieno says, “Those who have autoimmune disease don’t. To make matters worse, even private insurance firms shy away from such patients.”

Since cost is a huge impediment in the management of autoimmune disorders, the rheumatologists’ cry is for NHIF to step in. However, they know this requires a multisectoral approach involving the government.

Attempts to get comment from NHIF were unsuccessful.

FATIGUED AND FRUSTRATED

Dr Genga understands why a patient like Nandwa “is always in pain, fatigued and frustrated”.

Nandwa’s anxieties are heightened by fear of contracting Covid-19. Her immunity is already compromised and her cocktail of medicines includes immune suppressants.

She hardly ventures outdoors. She fears she’s not adequately armed to ward off coronavirus infection.

Dr Genga ranks patients according to risk. Low-risk patients don’t have to visit hospital frequently. Consultation could be over the phone. High-risk patients may have to isolate themselves.

“If patients with autoimmune disorders take the necessary precautions, practise hand washing, use sanitisers and wear masks, they should be fine,” he says.

It pains Dr Genga that during this Covid-19 pandemic, he’s lost two patients with autoimmune conditions. Both got infected with the coronavirus.

Feelings of burdening her family overwhelm Nandwa. Her fraternal twin sister is healthy. It distresses her that she’s the only sickly one in her family of five siblings.

“I have ankylosing spondilitis,” she says. “This is inflammation of the spine. It also affects the pelvic bones and even the jaws.”

Dr Otieno explains, “Ankylosing spondilitis belongs to a group of arthritis called seronegative arthritis. This broad group of diseases tends to affect the axial spine and also peripheral joints.

“Ankylosing spondilitis is a very progressive and destructive disease. If left untreated, patients will suffer serious disability, where they will have the spine fusing.”

Dr Genga adds, “The back is supposed to be flexible. If ankylosing spondilitis is not controlled, the back becomes stiff and movement becomes a challenge.”

One of the drugs recommended in slowing fusion of the spine is infliximab. It’s an infusion that takes about four hours to administer. “The first dose is given on day zero, then after two weeks, next after every six to eight weeks,” Dr Genga says.

COSTLY AFFAIR

The infusion may cost as much as Sh205,000. Nandwa’s worried how she’ll afford it. Dr Genga expresses some optimism, “We’ve been lobbying to try and convince drug companies to bring down the cost of medicine and they’ve started listening.”

Nandwa’s desire is to block any further complications that could arise. “She’s admitted almost every month,” her mother, Shisia says.

Nandwa contends with chronic pain that makes her wince when shifting position. She suffers stiffness in many parts of her body. She frets over cold weather and the thought of getting in contact with cold water sends chills down her spine.

She managed one dose of infliximab in 2019. It’s to be repeated this year. She’s got one infusion out of the required six. Her second is due.

Without a fully functional insurance cover, youthful Nandwa is staring at uncertainties that magnify her anxieties. More visits to a psychiatrist could be lined up.

The two rheumatologists place the cost of some drugs known as biologics, which can manage Nandwa’s illnesses, at between Sh60,000 and Sh100,000 per month. Since autoimmune disorders are for life, the tally is staggering.

Dr Otieno says there is a genetic aspect to ankylosing spondilitis. Additionally, “It’s usually more common in men than in women and the onset tends to be usually below the age of 40.”

Dr Otieno terms autoimmunity sicknesses as being “as if the body wages a coup against itself”. The only way to manage these conditions is “to make the immune system go a bit quiet”.

The Covid-19 environment has cast an economically ominous cloud over autoimmune patients and their loved ones, some of whom have lost their jobs.

Nandwa attends psychiatric counselling sessions every week or two, while her rheumatologist attends to her regularly, depending on how she feels.

Just like many patients fighting autoimmune disorders, Nandwa’s journey to the right diagnosis has been a winding one.

Dr Genga says there is no single test diagnosis. “The investigation is expensive and has to be done over and over again.” He yearns for the government to subsidise associated costs by having them incorporated in the NHIF package.

“I am asthmatic,” Nandwa says. “I started using an inhaler when I was 13.” She was treated for bronchitis, yet she didn’t have it. She was suspected to be diabetic. The test yielded a negative result.

She recalls that her breasts began swelling when she was in form two. “Mum used to think it was normal since some girls experience that prior to their menses,” she says. Her situation worsened.

“At first, they said my prolactin was high, so I was put on bromocriptine and cabergoline to lower the hormone,” she says. “It did not work,” she regrets. She ended at the doorstep of a gynaecologist at Eldoret hospital.

Prolactin is a hormone produced in the pituitary gland, which controls the activity of most other hormone-secreting glands. The hormone plays a role in lactation. Since Nandwa is aware of her high level of prolactin, she knows the term used, “hyperprolactinemia.”

As at the time of visiting her at her elder sister’s house at Waiyaki Way Ridge on July 15, she was on her fourth week of lactation. That was her third time.

She reports that she was once put on tamoxifen. She took the medicine for four days. She was startled. “I found out that the medicine is given to cancer patients at an early stage. I felt so bad, I stopped taking it since I didn’t have cancer.”

It was suspected that her ovaries had a problem. A scan was performed. Those fears were allayed. Her lactation nightmare reemerged in September 2019. “I lactated for eight days,” she recollects.

NEED FOR SUPPORT

Dr Genga encourages the formation of support groups for those living with autoimmune disorders to lobby for their issues. Due to the high cost of obtaining medication to manage autoimmune disorders, some patients skip drugs.

Nandwa is a member of the Scleroderma, Lupus and other Autoimmune Disorders (Sclad) support group. “We share drugs,” she says. “If I have a drug that someone doesn’t have and it’s excess, I give out.”

This practice is fraught with dangers. Dr Otieno says, “If you share your medicine with someone else, you do not get optimal treatment for yourself.” Additionally, “You could also be exposing the other person to dangers. Treatment is usually a risk versus benefit. So you’re exposing them to more risk.”

Meantime, for Nandwa, temporary relief due to her spine condition is derived from physiotherapy. She attends her sessions at the Nairobi West Hospital. Her physiotherapist is Gladys Moraa.

“Elsie sometimes misses her therapy because her insurance has not approved many sessions for her,” Moraa says. “It approves only two or five sessions.” Sometimes, though, the weather may dictate more sessions, especially during cold seasons.

Another concern that plagues Moraa about Nandwa is, “When I want to give her support, such as obtaining a back or joint brace for her, the cover doesn’t approve that she be given. Due to financial strain, she might miss some of these items.”

Nandwa says physiotherapy relaxes her tight back and loosens her stiff muscles, soothes her swollen feet, ankles and knees.

As she reports to the unit at the hospital, she’s welcomed by a 20-minute electrotherapy. “This stimulates the tissues to relieve pain and to reduce inflammation,” Moraa says.

Other exercises follow, either on her physiotherapy bed or in the gym under Moraa’s watchful eyes. Nandwa struggles. Moraa may remind her, “If you don’t do that exercise, your joints will not work properly.” Nandwa exerts herself to perform them to an appropriate degree.

Hydrotherapy at the hospital’s pool has been suspended due to the Covid-19 pandemic. Nevertheless, “Hydrotherapy promotes buoyancy. The effect of warm water makes the muscles feel relaxed, and that enables her to do the exercises with much ease,” Moraa says.

After each therapy session, Nandwa’s given a home programme, where she’s persuaded to continue with recommended exercises.

Data on how many individuals in the country suffer from autoimmunity disorders is scanty. Patients with these conditions are crying. Their expert caregivers, the rheumatologists, who are just about 10 in the country, have joined in the cries.

Unless the cost burden is taken off their shoulders, the patients will keep suffering.

Edited by T Jalio