A report by Swachh Bharat Mission says that 74.5 per cent of public places are equipped with toilets. Another report by the Ministry of Jal Shakti states that there are 2.23 lakh Community Sanitary Complexes built across all States and UTs under the Swachh Bharat Mission (SBM) since October 2014. Over 92 lakh toilets have been constructed since the launch of SBM Gramin (SBM (G)) in April 2020.

While toilets are there, are they accessible? This is the question one should ask. The National Family Health Survey (NFHS) focuses on 131 health indicators, but not until the NFHS 5 survey did they include the question of accessibility of toilets in the survey. This happened after the inputs from the Department of Drinking Water and Sanitation (DDWS) and the Ministry of Health & Family Welfare questioned the accessibility.

One might ask, why is the question of accessibility so important? The answer is quite simple. Access to water, sanitation and hygiene is the most basic human need and is also included under the Sustainable Development Goals by the UN.

Are These Numbers Real?

This thought crossed my mind because back in 2021, I went on a solo trip, on a bus to Udaipur from Delhi. There, the bus made two stoppages. This was done so people could get a quick dinner and freshen up, relieve themselves and be prepared for the rest of the journey. This was a nightmare. The bus only stopped for 10 minutes. While some men used the washroom, others went to the bushes.

For the women, there were three cubicles. One of them was broken, and the other one did not have a light bulb, which meant only one was usable. There was a long queue for that cubicle, and time was short. There was no point in trying to find an isolated corner, because it was past midnight, in an unknown area.

I waited anxiously. When finally, my turn came, I saw an overused, dirty washroom. The toilet seat is in a horrible condition. I wanted to touch nothing there. But I had to pee. So, I used my mask to cover my nose from the odour, folded my pants so they did not touch the floor and squatted. It was quite a task to balance.

On my way back to Delhi, I made sure to not drink any water for over a 13-hour bus journey. I dehydrated myself so I did not have to use the washroom. When I did reach, I was severely dehydrated and was sick for three days.

I shared my experience with my friends only to realise that many women have faced the same. There are no washrooms for women.

A friend of mine told me that it is because these roads and dhabas are mainly designed to serve men. They are the ones who travel at night or are on the roads most of the time. As a result, the few women who do travel or are on the road suffer.

Health Risks Women Are Prone To

Well, it is true, but partially. While holding your pee for too long can lead to health risks, peeing on a dirty toilet seat cannot lead to infections unless your urethra is in contact with the bacteria present on that toilet seat. However, nobody wants to sit on a dirty toilet seat, even if you do not get an infection. A safe and hygienic toilet is a basic need.

One of the regular saleswomen, Usha, who visits my house shared her experience with me. “Being on the road constantly means I must use the dirty public washrooms. But I do not want to use them. So, sometimes I ask my regular customers to let me use their washrooms. Some say yes, and some say no. I understand they are also concerned about their safety and privacy,” she says. As a result, Usha spends most of her day not drinking enough water and holding her pee when she is at work. Due to this, she also suffered from a Urinary Tract Infection (UTI).

Her friend, Halima too faced similar problems and due to increased levels of uric acid in her body, she suffered from Hyperuricemia.

Other health risks are kidney stones and other kidney problems, headaches, dull skin, xerostomia or dry mouth, fatigue, and urinary incontinence, which means losing control over your pelvic floor muscles leading to uncontrolled leakage of urine, seizures and weakness.

What Can You Do?

Wear comfortable clothes and capris. Capri pants are comfortable and are short in length, which means this won’t touch the toilet floor when you squat or sit.

Carry Essentials

Even though you cannot get a UTI alone from sitting on a toilet seat, it is always safe to carry a toilet seat sanitiser. If nothing, it can help you get rid of the bad odour so you can use your stand and pee device inside the toilet. You can also use disposable toilet seat covers if your knees are weak, and you cannot squat. Always flush with your seat down.

Always keep disposable gloves, a portable bidet (fill it with water before use), a pocket liquid handwash, wet wipes, tissues and sanitiser handy. Do not forget to keep extra sanitary pads. It might sound a lot, but I promise that it all fits in one pouch. Use this travel-friendly pouch every time you are on the road, or using a public washroom.

What Can We Learn From Others?

However, in case we do not get these technologically advanced toilets here, you can always pack a travel-friendly toilet kit!

The United States has signed 24 bilateral health Memoranda of Understanding or MoUs with Latin America and African countries under the Trump administration's America First Global Health Strategy.

The first agreement with Panama is described as “strengthening Western hemisphere health security”, which it added is “a priority”. Thereafter, four Latin American agreements too involve smaller grants and focus on disease surveillance. Other 20 agreements all with African countries who have been previous recipients of health grants via the now disbanded US agency for International Development or USAID and decimated US President's Emergency Funds for AIDS Relief (PEPFAR).

The five-year MoUs aim to quickly shift financial responsibility for key health services to national governments. In several countries, including Kenya, Uganda and the Democratic Republic of Congo (DRC), more than half of HIV programme funding has traditionally come from donors, particularly the United States. In the DRC, for instance, at least half of the antiretroviral medicines used have been financed by the US.

What Do These MoUs Comprise?

The transitional Memorandums of Understanding (MoUs) signed between the United States and several countries come with a major condition. They require strong investment in infectious disease surveillance systems.

The goal is to ensure that pathogen information from outbreaks is shared with the US within a week. Officials say this helps detect global threats early and protect public health.

At the same time, it gives US pharmaceutical companies early access to pathogen data, allowing them to develop vaccines, medicines and diagnostics more quickly.

The US–DRC Health Agreement

The United States and the Democratic Republic of Congo (DRC) signed their health MoU on 26 February. According to the US State Department, the agreement focuses on strengthening the country’s ability to detect and contain infectious disease outbreaks before they spread internationally.

• The focus reflects the country’s recent health challenges.
• The DRC has experienced several Ebola outbreaks in recent years.
• It is also dealing with the world’s largest mpox outbreak.

Funding Commitments

Under the agreement:

• The US will invest up to $900 million over five years
• The DRC will increase its health spending by $300 million

Most of the funding will support a national integrated surveillance and outbreak response system.

This includes:

• A laboratory network capable of detecting outbreaks within seven days
• Faster outbreak investigations and response systems
• Coordination between the US and other global health partners

The MoU also aims to modernize health data systems through electronic medical records, interoperable platforms, better trained community health workers and expanded services for HIV, tuberculosis, malaria, polio and maternal and child health.

Minerals Before Health

In several cases, health agreements were preceded by deals related to natural resources.

The United States and the DRC first signed a strategic partnership on critical minerals. The deal aims to secure supplies of minerals needed for commercial and defense industries.

The DRC is one of the world’s largest sources of rare earth minerals, including cobalt and copper. China has historically dominated the purchasing and processing of these resources.

Recently, the DRC has begun opening its mineral sector to US investors. According to Reuters, the government sent Washington a shortlist of state owned assets involving:

• manganese
• copper
• cobalt
• gold
• lithium

Guinea followed a similar path. It signed a minerals MoU with the US on 5 February, followed by a health MoU on 27 February. The health agreement prioritizes strengthening laboratory networks and improving biosafety standards by 2027.

Legal Pushback and Rejected Deals

Not all countries are comfortable linking health support to access to resources or data.

In the DRC, a group of lawyers has challenged the minerals agreement in the Constitutional Court. They argue that the deal violates the constitution and undermines national sovereignty over natural resources.

Zimbabwe also withdrew from negotiations with the US over a similar agreement.

Officials said the country was asked to share biological resources and outbreak data for years without any guarantee that vaccines, treatments or diagnostics developed from that data would be available to Zimbabwe if a future crisis occurred. They also said the US did not offer reciprocal sharing of its own epidemiological data.

Concerns in Kenya and Zambia

Kenya’s agreement with the United States has also faced legal hurdles. The country’s High Court halted the MoU after two court challenges questioned provisions that could allow the US access to patient data and pathogen information.

Zambia has also expressed reservations about its proposed health deal with Washington. The agreement stalled after the US linked the billion dollar package to cooperation in the country’s mining sector, particularly copper and cobalt.

Zambia has since asked for revisions, saying parts of the deal do not align with its national interests.

Critics Call the Policy “Extractive”

Some experts argue that these agreements reflect a broader shift in US global health policy.

Sophie Harman, professor of international politics at Queen Mary University of London, wrote in the BMJ that extraction appears to be central to the approach.

According to her analysis, the policy focuses less on improving global health outcomes and more on strengthening US economic and geopolitical interests, including competition with China.

She warns that countries entering such agreements could risk giving up resources or scientific data while gaining relatively limited health benefits.

Rare diseases may be individually uncommon, but together they represent a large and persistent care gap. More than 300 million people globally live with a rare condition, and when families and caregivers are counted, the impact touches over one billion lives. The economic burden is estimated to exceed $7 trillion each year.

In India, the challenge is compounded by geography, uneven specialist availability and the lifelong nature of many rare conditions. The question is no longer whether the system recognises the need, but whether it can deliver continuous care at scale.

Why Patients Still Struggle To Reach Care

For most rare disease patients, the hardest part is not always the science but the pathway to care. Diagnosis is often delayed, sometimes by years. Patients move between providers carrying incomplete records. Specialist centres are concentrated in a few large cities, forcing families to travel repeatedly for consultations that may last only minutes. This is both financially draining and clinically inefficient.

Telemedicine is beginning to ease some of this pressure. Virtual consultations allow specialists to extend their reach beyond metropolitan clusters. For families in tier two and tier three locations, this can mean earlier clinical input and fewer avoidable journeys.

Remote monitoring tools are also shifting care from episodic hospital visits to continuous oversight, which is particularly valuable for conditions that require close tracking over time.

Why Data Matters More Than Ever

If access is the visible challenge, data fragmentation is the structural one. Rare disease information remains scattered across hospitals, laboratories and individual case files. This weak visibility affects everything from prevalence estimates to therapy development. Policymakers struggle to size the problem accurately. Clinicians miss longitudinal patterns. Industry investment becomes harder to justify.

Digital health systems can address this by creating longitudinal patient records that follow individuals across providers. Even relatively modest steps such as strengthening diagnostic reporting or building disease registries can significantly improve coordination. For rare diseases, where patient numbers are small and widely dispersed, structured data is not a luxury. It is the backbone of effective care.

India’s Digital Opportunity

India has begun building the rails needed for this transition. The Ayushman Bharat Digital Mission is creating a national health data architecture anchored in unique health IDs and interoperable records. If applied rigorously to rare diseases, this infrastructure can support lifelong patient tracking, improve referral accuracy and give policymakers clearer visibility into disease burden.

Interoperability will determine how far this effort goes. The growing adoption of FHIR standards and API led systems is slowly allowing previously disconnected hospital platforms to exchange clinical information. For rare disease patients, whose care often spans multiple providers and years of follow up, this continuity is not technical detail. It is essential to safe treatment.

AI Moves From Promise To Practice

Artificial intelligence is also starting to show practical value. Globally, AI based clinical decision support tools are being used to flag potential rare disease cases hidden within routine health records. This matters because many rare conditions present with non specific symptoms and are frequently missed in early stages.

Collaborations between technology firms and pharmaceutical companies are demonstrating how electronic health record analysis, suspect patient lists and longitudinal data can help clinicians triage cases earlier for confirmatory testing. As these tools mature and integrate into routine workflows, they could significantly shorten the diagnostic odyssey that rare disease families currently endure.

Engaging Patients Beyond The Clinic

At the patient level, the shift is becoming more practical and visible. Tools that let people log symptoms, get medication reminders and share updates in real time are helping them stay more consistent with treatment, while giving clinicians better insight between visits. For lifelong conditions, this kind of day to day support brings care into the flow of everyday life, where most disease management actually happens.

Federated data models add an important layer of trust. By enabling analysis across multiple small patient populations without moving sensitive personal data, they address both privacy concerns and the sample size limitations that have historically slowed rare disease research.

From Pilots to Systems

Progress is visible across both public and private sectors. Regulated digital health platforms are already supporting rare disease programmes in several countries. Industry collaborations are using AI to detect conditions that often go undiagnosed for years. Public genomic databases are generating new diagnoses by enabling experts to build on shared evidence.

India’s immediate task is to move beyond isolated pilots. Telemedicine networks must be tied to referral protocols and reimbursement pathways. Digital registries must be built with strong governance and patient trust. AI tools need to be embedded into everyday clinical workflows rather than remaining demonstration projects.

Why Investment Makes Fiscal Sense

Poorly managed rare diseases create avoidable hospitalisations, lost productivity and long term care costs. Evidence increasingly shows that targeted investments in data systems, screening and coordinated care can reduce downstream expenditure. For low- and middle-income countries working within tight health budgets, these are not marginal gains.

India already has many of the building blocks needed to improve rare disease care, from expanding digital health infrastructure to growing AI capabilities and increasing policy focus. The real test now is disciplined execution.

Telemedicine networks must deepen their reach, patient registries need to become reliable and usable, data must move securely across systems, and clinicians should have decision support tools that fit into everyday practice. Taken together, these steps can meaningfully narrow today’s access gaps.

Digital health will not make rare diseases any less complex. But if implemented thoughtfully, it can reduce distance, shorten delays and bring much needed continuity to care journeys that are currently fragmented. For families managing lifelong conditions, that would be a tangible and much overdue shift.

In India, it is not uncommon for families to travel across cities, sometimes across states, seeking answers for symptoms that simply don’t make sense. A child who is not meeting developmental milestones. A young adult with unexplained muscle weakness. Recurrent hospital visits with no clear diagnosis.

For many, this long and frustrating search for clarity is what medicine calls the diagnostic odyssey.

Rare diseases are individually uncommon, but collectively they affect millions of people worldwide. Rare diseases affect an estimated 263–446 million people worldwide, spanning every geography, healthcare system, and socioeconomic context. India alone is estimated to have 70 million people living with rare diseases.

Importantly, although 70%–80% of rare diseases are genetic in origin, routine medical practices often consider genetic testing only after years of inconclusive evaluations.

In India, this challenge is amplified by several factors, including limited awareness of rare conditions, uneven access to specialized testing across regions, and a tendency to treat symptoms individually rather than look for a unifying cause.

A child may see a neurologist for seizures, a gastroenterologist for feeding issues, and a developmental pediatrician for delays, without anyone connecting the dots.

Studies have shown that patients and their families frequently wait years before receiving a confirmed diagnosis. Globally, rare disease diagnosis can take anywhere between 5–30 years.

In a country like India, where healthcare expenses are often paid out-of-pocket, this prolonged uncertainty can be devastating. Beyond cost, there is the psychological toll; parents wondering if they missed something and adult patients often questioning whether their symptoms are “all in their head”. During this period, families undergo repeated tests, face conflicting opinions, and bear significant emotional and financial strains.

Research shows that families experience profound emotional burden during the diagnostic odyssey, including stress, anxiety, and feelings of isolation.

Why Do These Conditions Stay Undetected For Years?

In many cases, the explanation is written into a person’s DNA. Genetic disorders rarely announce themselves clearly; instead, they often mimic common illnesses. Fatigue may look like anemia, developmental delay may resemble a learning difficulty, and repeated infections might be treated as isolated events rather than part of a larger pattern. Because the symptoms overlap with more familiar conditions, doctors naturally begin by treating what appears most likely.

Most healthcare systems also follow a step-by-step diagnostic approach; rule out the common causes first, then move to less common ones if symptoms persist. While this method works well for typical illnesses, it can significantly delay answers for rare genetic conditions. Without looking directly at the genetic blueprint, the underlying cause may remain hidden, even as the visible symptoms are managed one at a time.

Today, advances in genomic technologies such as whole-exome sequencing (WES) and whole-genome sequencing (WGS) allow us to examine thousands of genes simultaneously. Rather than guessing which gene might be responsible, we can comprehensively analyze a patient’s DNA to search for answers.

Evidence increasingly supports the use of genomic sequencing earlier in the diagnosis and care of rare diseases. Similarly, studies highlight how genomic testing not only provides diagnoses but also directly influences treatment decisions and long-term care planning.

In the Indian context, integrating genetic testing earlier could transform care. Instead of years of fragmented consultations, patients could receive a precise diagnosis sooner. This clarity can:

• Prevent unnecessary or repeated investigations
• Guide appropriate treatment strategies
• Inform family members about potential risks
• Enable informed decisions about future pregnancies
• Equally important, it replaces uncertainty with understanding.

Encouragingly, awareness around rare diseases is growing in India, and conversations around early genomic testing are becoming more mainstream. As technology becomes more affordable and accessible, we have an opportunity to fundamentally change the patient journey.

No family should spend years searching for answers when science has the tools to help. By embracing genomic medicine earlier in the diagnostic pathway, we can shorten the odyssey, reduce suffering, and empower families with clarity.

Because when symptoms don’t add up, sometimes the answer lies written in our genes.