Parkinson’s disease care in Pakistan: overcoming challenges in low- and middle-income countries

After completing fellowship training in Parkinson’s disease (PD) and movement disorders abroad, I (SH) returned to clinical practice in Pakistan, a country of over 255 million people¹ but with only a handful of fellowship-trained specialists in this field. I expected challenges, but the systemic, cultural and clinical realities I encountered over the first 18 months were more complex than anticipated. Similar issues would be prevalent in other low- and middle-income countries (LMICs) that are not expected when caring for people with Parkinson’s disease (PwP) in the West. This viewpoint offers on-the-ground insight into the barriers to PD care in Pakistan and potential strategies to address them.

Lack of Epidemiological Data and the Emerging Burden of Young-Onset Parkinson’s Disease

Pakistan currently lacks a national PD registry or population-based epidemiological data. This is not unusual, as only four Asian countries (Iran, Japan, South Korea and Thailand) have a PD national registry.² Historically, PD was considered less prevalent in South Asia, a perception partially supported by meta-analyses indicating lower rates in parts of Asia compared with Western countries.^{3 4} However, clinical experience in recent years suggests a higher disease burden than previously assumed,⁵ particularly of young-onset PD (YOPD), defined here as symptom onset before the age of 50 years. A recent Indian study reported a mean age of onset of PD symptoms of 51.03±11.32 years, with 45% of patients younger than 50 years.⁶ In contrast, Western cohorts report YOPD in fewer than 10% of PD cases.^{7 8} A preliminary review of outpatient records at our centre showed that over 12% of patients with PD were aged 50 years or younger at the time of their initial visit, without factoring in the actual symptom onset, suggesting the true proportion of YOPD is likely even higher. A 2006 single-centre study from Pakistan found that 13% of patients with PD had symptom onset before the age of 40 years.⁹ This proportion would likely have been higher had a <50-year threshold been used.

This emerging demographic pattern has significant implications. YOPD leads to prolonged morbidity, increased psychosocial burden and greater loss of productive years. Moreover, the reduced awareness about YOPD among healthcare professionals and the public contributes to delayed diagnosis and under-recognition of the disease burden.

Public Awareness and Health Literacy Barriers

Low literacy rates (37.7%),¹⁰ poor health literacy in Pakistan and lack of PD resources in local languages pose major barriers to public awareness and early intervention. Misconceptions are prevalent, with many considering PD to be a normal part of ageing, a psychiatric disorder, contagious or untreatable. Similar public misconceptions are noted globally,^{11 12} with a higher prevalence in LMICs compared with developed countries.¹¹ Public and professional understanding of non-motor symptoms remains particularly limited, despite their major impact on the quality of life of PwP.¹¹

Although the International Parkinson and Movement Disorder Society (MDS) has provided Urdu-language handouts,¹³ awareness of these resources remains limited among local neurologists. This represents a critical gap that should be proactively addressed by national and regional neurologists, as well as other healthcare professionals, to disseminate culturally and linguistically tailored materials.

Workforce Shortage and Fragmented Care

Pakistan’s neurologist-to-population ratio is 1 per million,¹⁴ compared with 7 per million in the American region and 66 per million in Europe.¹⁵ Neurologists are concentrated in urban areas, further limiting rural access. Movement disorder neurologists are particularly scarce, with several Asian countries reporting none.² Further, PD-specialised nurses remain the least available and accessible healthcare professionals.² Consequently, access to specialised PD care remains disproportionately restricted to wealthier and more influential individuals, exacerbating existing health inequities. Most patients with neurological disorders are often seen by general practitioners, neurosurgeons or psychiatrists. They lack the specialised training to accurately diagnose PD, differentiate it from its mimics and manage PwP appropriately. This leads to unnecessary neuroimaging and other investigations, further straining an already overburdened healthcare system. Delays in diagnosis, inadequate counselling about PD prognosis and expectations often lead to patient dissatisfaction, unrealistic hopes and changing doctors to revisit the diagnosis, resulting in fragmented care.

The fee-for-service model and reliance on out-of-pocket payments incentivise high patient volumes and short consultations with limited physical examinations, documentation and counselling. Subtle clinical findings are often missed, leading to misdiagnosis and poor longitudinal care.

Primary care consultation times range from 48 s in Bangladesh to 22.5 min in Sweden, with Pakistan averaging under 2 min in the public sector.¹⁶ Physicians may see over 90 patients daily, often without structured appointment systems. Non-motor symptoms, exercise counselling and patient education are routinely overlooked, resulting in fragmented care, patient dissatisfaction and unrealistic expectations, sometimes leading patients to abandon medication or seek unproven treatments. It is not uncommon for the PwP to live with the condition for more than 5 years without even knowing the name of their illness.

Limited Access to Medications and Advanced Therapies

Carbidopa-levodopa, the cornerstone of PD treatment, is often unavailable in all formulations. Extended-release formulations are usually either difficult to obtain or priced far beyond market value.¹⁷ When available, resourceful persons buy in bulk, reducing access for financially disadvantaged patients. Some patients import PD medicines from other countries at a very high cost. Treatment disruptions and frequent medication switching are common, causing symptom fluctuation and reducing quality of life. This unavailability of essential anti-Parkinsonian medications, including levodopa formulations, is also prevalent in other Asian countries and LMICs.217,19

While our centre offers deep brain stimulation (DBS), only five patients have undergone surgery in the past 12 months. Each surgery costs around 9–10 million Pakistan rupee (PKR) (~US$31 000–35 000), while the average monthly income is only 41 545 PKR (less than US$150).²⁰ Devices available are typically older models with no access to latest technology like directional leads, image-guided programming or self-adjusting DBS. Although motor outcomes post-DBS have been clinically favourable, patient dissatisfaction remains higher compared with Western populations, largely due to high out-of-pocket costs and unrealistically high expectations.

Beyond Medications: Non-Motor and Rehabilitation Gaps

Non-motor symptoms of PD, like depression, cognitive impairment, sleep disturbances and autonomic dysfunction, are frequently under-recognised and undertreated, adversely affecting patients’ quality of life. Exercise, a cornerstone of PD management, is often neglected. Most physicians do not reinforce it, and even if it is advised, PwP have limited resources in the community for exercising. Safe walking spaces are limited, and PD-specific rehabilitation services, such as Lee Silverman Voice Treatment (LSVT)-BIG, LSVT-LOUD and Rock Steady Boxing, are virtually unavailable.

Call to Action

Improving PD care in Pakistan requires a multipronged, resource-sensitive approach (figure 1).

Figure 1. Key challenges in Parkinson’s disease care in Pakistan and proposed system-level solutions. PD, Parkinson’s disease.

Enhancing Public and Patient Education

Public campaigns in regional languages through social media, educational videos, handouts and community outreach can promote early consultation, timely diagnosis and management. Digital platforms offer scalable and cost-effective tools to reach a broad audience. With the help of artificial intelligence, educational content can now be developed rapidly and efficiently. Short videos in local languages explaining key aspects of PD can be especially impactful. Hosting such content on the platforms of the Pakistan Society of Neurology, MDS and the World Federation of Neurology (WFN) could significantly enhance public awareness and understanding of PD.

For patients already diagnosed, structured education should be integrated into routine care. At our centre, I use printed handouts and QR codes linking to Urdu-language videos on PD, LSVT exercises and medication guidance (online supplemental file 1). A monthly PD support group meeting is organised for patients and their families, rotationally led by neurologists, therapists, psychiatrists and neurosurgeons, and focus on topics that are often not properly addressed during routine clinical visits.

Expanding Training and Task-Sharing

Given the shortage of neurologists, task-sharing with family physicians and internists is essential. We, a group of neurologists with an interest in movement disorders in Pakistan, have conducted short (2–3 hours) targeted training sessions to educate non-neurologists on basic recognition and management of PD and related conditions in multiple cities throughout Pakistan. Early feedback suggests that such initiatives are well-received and practical. Scalable models like these can extend care capacity nationwide. Additionally, more international fellowship opportunities and structured training programmes in movement disorders are crucial for building local expertise in this subspecialty.

Improving Access to Medications and Therapies

Ensuring reliable access to all carbidopa-levodopa formulations should be a national priority. Inclusion in essential drug lists, improved government procurement, pricing regulation and exploring local production or pooled procurement could significantly enhance availability and affordability.

For advanced therapies (eg, DBS, botulinum toxin), public–private partnerships, tiered pricing models and national centres of excellence with subsidised care, along with research collaborations for cost-effective innovations, could gradually increase access.

Conclusion

The burden of PD in Pakistan is underestimated, under-reported and undertreated. Patients face delays in diagnosis, misinformation, financial hardship and limited access to specialist care and advanced therapies. Despite these challenges, practical solutions exist from public education to task-sharing. Support from global organisations such as the MDS, WFN and American Academy of Neurology (AAN) can play a pivotal role through training, educational access and research partnerships. LMICs, like Pakistan, have high patient volumes and low resource settings that offer unique insights that can enrich the global understanding of PD. Equity in neurological care requires shared responsibility. Through collaborative efforts, it is possible to begin narrowing the gap between two worlds: one of abundance and one of unmet need.