10 Rare Diseases You Didn't Know Were Covered under Critical Illness Insurance

Severe illnesses like cancer, heart attacks, strokes, Parkinson's disease, and diabetes can have a substantial financial impact. Fortunately, when an insured individual is diagnosed, critical illness insurance provides a lump sum payout.

Like other insurance policies, critical illness insurance offers long-term protection and peace of mind by guaranteeing financial security in the face of uncertainty. It can act as an income replacement to help cover lost wages, travel expenses for specialised treatments, or accommodations.

However, an often-lingering question is whether critical illness insurance covers rare diseases.

What are rare diseases?

Rare diseases are ailments that affect only a small fraction of the population. They can be especially difficult to treat because of their distinct symptoms, sophisticated treatment plans, and insufficient funding for research and development of efficient treatments. Treatments for such illnesses can be costly and hard to access. 

While standard policies cover common critical illnesses like cancer, heart attack, and stroke, some insurance providers have yet to expand their services to include rare diseases.

Financial and emotional toll of rare diseases

Medical expenses for individuals with rare diseases are usually astronomically higher than those for people with more prevalent ailments. In fact, they can be three to five times more than those of patients with common diseases. This financial strain can be too much to bear for ordinary Malaysians - particularly when treatment options are few or cutting-edge.

To aggravate things, the uncertainties and difficulties involved in managing a rare ailment sometimes cause patients and their families great psychological pain.

It is possible to experience emotions of powerlessness, fear, and isolation during the protracted and frequently stressful "diagnostic odyssey" of getting an appropriate diagnosis. The emotional struggles may also be exacerbated by stigma and exclusion from society.

As for caregivers, burnout and declining mental health can result from the strain of providing care as well as the anxiety of navigating complicated healthcare systems.

Does insurance cover rare diseases?

Of the rare diseases listed in Malaysian Rare Disease List, only a small number are usually covered by critical illness insurance policies. Examples include multiple Sclerosis, Muscular Dystrophy, and Systemic Lupus Erythematosus. However, with products like PRUMy Critical Care , families have a new lease of life with insurance coverage for rare diseases.

10 rare diseases coverd by insurance

Here are 10 rare diseases covered by insurance in Malaysia:

1. Pulmonary Arterial Hypertension

Pulmonary Arterial Hypertension (PAH) is a progressive condition characterised by elevated blood pressure in one's pulmonary arteries. These arteries work to transport blood from the heart to the lungs.

Elevated pressure causes the heart to work harder to pump blood. Symptoms include exhaustion, shortness of breath, chest pain, and ankle and leg swelling.

The treatment of PAH has improved considerably in Malaysia, with new recommendations emphasising early identification and certain treatments to enhance patient outcomes.

2. Medullary Cystic Disease

Medullary Cystic Disease is a rare genetic disorder that primarily affects the kidneys, leading to progressive kidney failure. This disorder is typified by cyst development in the renal medulla, which may impair kidney function and result in symptoms like anaemia, increased thirst, and frequent urination.

Due to the limited availability of specialised treatments in Malaysia and the need for continuous kidney health monitoring, patients with this ailment may encounter substantial obstacles. As their condition worsens, they may eventually need kidney transplants or dialysis to maintain their health.

Early detection and treatment are crucial to slow the disease's progression and improve patient outcomes.

3. Aplastic Anaemia

Aplastic anaemia is a rare medical condition in which the bone marrow fails to produce sufficient blood cells, leading to a deficiency of red blood cells, white blood cells, and platelets.

This may cause symptoms like excessive bleeding, weariness, and an elevated risk of infections. In Malaysia, treatments include immunosuppressive medication, blood transfusions, and, in certain cases, stem cell transplants.

However, due to the condition's rarity, prompt diagnosis and treatment depend heavily on healthcare professionals' knowledge and comprehension of the disease.

4. Motor Neuron Disease (MND)

Motor Neuron Disease (MND) is an uncommon neurodegenerative disorder that progressively affects motor neurons in the brain and spinal cord, causing muscle weakness, atrophy, and, eventually, paralysis. 

MND's symptoms may impair mobility and daily functioning and lead to respiratory failure. Since there is no known cure, multidisciplinary treatment strategies, such as physiotherapy, occupational therapy, and nutritional support, are crucial for managing symptoms.

5. Progressive Scleroderma

Progressive Scleroderma is a rare autoimmune disorder characterised by the hardening and thickening of the skin and connective tissues. Symptoms may include Raynaud's phenomenon (restricted blood flow to fingers and toes), gastrointestinal problems, and skin tightening.

In order to alleviate these symptoms, immunosuppressive medications, physical therapy, and routine organ function monitoring are frequently used in its management.

6. Eisenmenger's Syndrome

Eisenmenger’s Syndrome is a rare heart condition that arises from untreated congenital heart defects. It leads to high blood pressure in the pulmonary arteries and is frequently related to disorders such as ventricular septal defects, wherein irregular blood flow raises lung pressure and irreversibly modifies the pulmonary vasculature.

Fatigue, cyanosis (bluish skin), and dyspnea are among the symptoms of this rare disease. Management usually entails treating the underlying cardiac issue andoccasionally, lung transplantation may be required. Due to its complexity, a multidisciplinary approach is generally necessary for proper care.

7. Infective Endocarditis

Infective Endocarditis is a rare but serious bacterial infection of the heart valves or endocardium, which can lead to severe complications such as heart failure or systemic embolism.

It is often linked to intravenous drug use, pre-existing cardiac problems, and dental treatments that introduce bacteria into the bloodstream. Heart murmurs, tiredness, chills, and fever are possible symptoms of this ailment.

Infectious endocarditis must be diagnosed expeditiously and treated with antibiotics - and in more severe cases, surgery may be necessary to replace or repair damaged heart valves.

8. Myasthenia Gravis

Myasthenia Gravis is a rare, chronic autoimmune disease that impairs nerve-muscle transmission, resulting in fatigue and muscle weakness. Patients may encounter symptoms like double vision, drooping eyelids, and trouble swallowing.

This illness is challenging to control due to its fluctuating intensity. Thymectomy (surgical removal of the thymus gland) is a common treatment option, along with immunosuppressants and anticholinesterase drugs. However, these treatment options rely heavily upon an early diagnosis for optimal outcomes.

9. Osteogenesis Imperfecta

Osteogenesis Imperfecta (OI), also known as brittle bone disease, is a hereditary condition characterised by brittle bones that break easily, often with no obvious cause.

OI can significantly impact a patient's quality of life, as frequent fractures can cause chronic pain and mobility issues. The disease is typically caused by a malfunction in the synthesis of collagen.

Physical therapy, pain treatment, and occasionally surgical measures to fix fractures are all part of the multidisciplinary approach that is commonly used in its management.

10. Adrenal Gland Disorder

Adrenal gland disorders are a group of uncommon illnesses affecting the adrenal glands, whichproduce hormones that regulate stress, immunity, metabolism, and inflammation.

These disorders include Addison's disease (adrenal insufficiency) and Cushing's syndrome (excess cortisol). These conditions may cause symptoms like exhaustion, weight loss, and hormone imbalances.

Treatment often involves medications to regulate hormone production or hormone replacement therapy. For the most part, early detection and adequate management are crucial for effective management.

Rare disease insurance in Malaysia

Rare disease coverage is available through PRUMy Critical Care, one of Prudential Malaysia's critical illness insurance plan. Upon diagnosis of one of the insured rare illnesses, this plan pays a lump payment that can be utilised for other financial responsibilities, daily living expenditures and medical charges.

Because insurance for rare diseases is nuanced, patients should always speak with their insurance provider to learn the details of the policy offered. Selecting the best critical illness insurance requires considering one's financial situation, available rates, risk tolerance, and specific needs.

Conclusion

Rare diseases frequently have a cascading effect on one's financial situation. In addition to the drawn-out recovery process, one may have to budget for other costs beyond medical bills, like lost wages and daily living expenditures.

Critical illness insurance offers coverage for rare diseases, providing a financial safety net and acknowledging the unique challenges faced by those affected. It helps alleviate some of the stress and uncertainty associated with managing rare health conditions. However, it’s imperative to make sense of the plan's exclusions and restrictions.