Pain of nightmarish disease, high cost of drugs

Patients with autoimmune disorders find themselves in a tough spot financially due to the high cost of managing their conditions.

Dr Fred Otieno, a rheumatologist who practises at Aga Khan University Hospital in Nairobi, says: “Patients with autoimmune disorders do not fall under categories of those insured by the National Hospital Insurance Fund (NHIF).”

Dr Eugene Genga, a lecturer at University of Nairobi feels there is an imbalance in the way payments are made for patients. “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, yet the drug is by the same company,” he says.

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

Since cost is a huge impediment in the management of autoimmune disorders, the rheumatologists want NHIF to step in.

If the rheumatologists’ wishes are embraced, then one of the beneficiaries could be Elsie Nandwa, 20, who has been battling a flurry of autoimmune disorders since childhood. Nandwa has been admitted to hospitals many times. Last year, she could not promptly raise her 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 that I cried,” she recalls. Her mother’s insurer catered for part of the bill.

COCKTAIL OF DRUGS

Neriah Shisia, her mother, says: “It was hectic. 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 (Teachers Service Commission) chipped in with Sh150, 000. I took a soft loan and well-wishers also helped.”

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

It pains Dr Genga that he has lost two patients with autoimmune conditions to Covid-19.

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

Nandwa’s numerous visits to medical facilities over the years have left a list of medical terms imprinted in her mind. “I have ankylosing spondylitis,” she says with ease. “This is inflammation of the spine,” she explains. “It also affects the pelvic bones and even the jaws.”

Dr Otieno fine-tunes that explanation: “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.”

SERIOUS DISABILITY

Nandwa reveals that she’s very inquisitive. When a diagnosis is made on her, she inquires what it means. If a therapy is prescribed, she seeks to understand what it entails. 

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

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

One of the drugs recommended in slowing down fusion of the spine is the infliximab infusion. Dr Genga says it 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,” he expounds.

The infusion may cost as much as Sh205,000. Nandwa is worried how she will afford it. Dr Genga expresses some optimism: “We have been lobbying drug companies to bring down the cost of medicine and they have started listening.”

He adds: “The company that manufactures infliximab has introduced a programme for a different drug that can work the same way as infliximab, but at a lower cost, though still expensive for most.”

SOPHISTICATED TECHNOLOGY

Nandwa’s desire is to block any further complications that could be sparked. “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 has to be repeated this year. She has 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.

Drugs that manage Nandwa’s ailments are expensive. Dr Otieno states that one reason for this is the sophisticated technology employed to manufacture them.

The two rheumatologists place the cost of some drugs known as biologics 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 spondylitis. Furthermore, “It’s usually more common in men than in women and the onset tends to be usually below the age of 40".

WRONG DIAGNOSIS

Nandwa’s plight is replicated by scores of other patients who are coping with autoimmunity sicknesses, that Dr Otieno, illustrates, “are 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 ominous cloud over autoimmune patients and their loved ones, some of whom have been rendered jobless.

Nandwa reckons how difficult it is to come to terms with her condition. She attends psychiatric counselling sessions after every one or two weeks, while her rheumatologist attends to her regularly, depending on how she feels. If she has consultation fees, she pays. If she does not, she is grateful her rheumatologist understands how drained she is.

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 the associated costs by having them incorporated in the NHIF package.

“When Nandwa was young, she used to break her legs and arms,” her mother says.

“I am asthmatic,” Nandwa further discloses. “I started using an inhaler when I was 13.” She was treated for bronchitis yet she did not have it. She was suspected to be diabetic. The test was negative.

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. She was put on medication.

“At first, they said that my prolactin was high, so I was put on bromocriptine and cabergoline to lower the hormone,” she unleashes her jargon of medical terms. “It did not work,” she regrets. She ended at the doorstep of a gynaecologist at an 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.

CANCER DRUGS

Her body’s fight against her is frustrating. “I once threw away my medicine,” she laments. “The only person I disclosed this to was my psychiatrist.”

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.

A Fine Needle Aspiration (FNA) Biopsy and a magnetic resonance imaging (MRI) were performed on her brain to assess her pituitary gland. FNA is a procedure that involves the insertion of a thin needle into the skin to sample fluid or tissue.

“I was put on tamoxifen,” she remembers. She reports that she took the medicine for four days and googled the drugs to satisfy her curiosity. She was startled.  “I found out that the medicine is given to cancer patients at an early stage. I felt so bad that I stopped taking the medication since I did not have cancer," she says.

In February 2019, she went to a hospital to see a gynaecologist. A mammogram for the breast was recommended. However, when she went for it, she was told it could not be done since she was too young.

Instead, it was suspected that her ovaries were the problem. A scan was performed. Any fears regarding her ovaries were allayed. Her lactation nightmare reemerged in September2019. “I lactated for eight days,” she recollects. “Before that, I had an ultra sound for the breasts and it was said I had blocked veins.” She termed that, “very bad news".

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

SHARE MEDICINE

Nandwa is a member of the Scleroderma, Lupus and other Autoimmune Disorders support group. “We share drugs,” She painfully discloses. “If I have a drug that someone does not have and it is in 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 are exposing them to more risk.”

In the 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. More than these, the insurance will not cover.” 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 insurance does not approve it. 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 is welcomed by a 20-minute electrotherapy. “We combine moist heat therapy and electrotherapy. These stimulate the tissues to relieve pain and to reduce inflammation,” says Moraa.

SCANTY DATA

Other exercises follow either on her physiotherapy bed or in the gym under Moraa’s watchful eyes. Nandwa struggles. Moraa reminds her: “If you don’t do that exercise, your joints will not work properly. Try and do them.” 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. The highly contagious disease could easily be transmitted through the pool. Nonetheless, Moraa explains why this would be useful to Nandwa, “It promotes buoyancy. The effect of warm water makes the muscles feel relaxed and that enables her to do the exercises with much ease," she says.

Moraa believes the unit offers exercises for all joints that are ideal for strengthening Nandwa’s muscles. After each therapy session, she is given a home programme.

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 their call.

By the time of going to press, NHIF had not responded to the concerns raised in this story.

KNA