A practical guide for leaders who need to protect health, performance, privacy, and continuity at work.

An employee who feels exhausted, breathless, has swollen ankles, or gets dizzy may have more going on than just stress. With our effective strategies for managing cardiac Amyloidosis in business, business owners, HR, and managers can manage with structure rather than with guesswork.

Cardiac amyloidosis is a disease where protein deposits in the heart tissue cause the heart muscle to become stiff, preventing the heart from contracting and therefore filling with adequate blood volume. This can affect an employee's attendance, travel, workload, safety-sensitive duties, ensure appropriate insurance claims are made, and affect succession planning. Business aims are to set up safe, lawful and flexible ways of managing employees with this medical condition.

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Workplace risks with TTR Amyloid Cardiomyopathy

Employees can be productive for years after their diagnosis, or they may need to switch between tasks of different kinds of physical demands within weeks. Their symptoms can change within days after a change in their medication, or because of fluid retention, or because of an infection. As a result of these fluctuations, employees need more than just an "if you need anything, tell us" kind of management.

TTR Amyloid Cardiomyopathy patients experience symptoms that affect their work, such as low energy, near-fainting when standing up, reduced walking distance, and hazy brain due to poor cardiac output and side effects from their medication. A sales director will be just fine at a meeting to discuss strategy but then falter with regards to tasks such as airport transfer and subsequent back-to-back dinners with clients. A warehouse supervisor will be sharp and sound, but, as with above, will be rendered unsafe by his dizziness whilst using ladders.

Risk mapping should be carried out by task, not by job title. A focus on driving, working at height, using machinery, long periods of standing, night work and emergency response tasks should result in a closer look at these. A short assessment by occupational health and a regular review (every 60-90 days) during periods of uncertainty will allow organizations to adapt to issues without over-reacting and create a defensible position.

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Build a Work Plan Around Diagnosis and Duties

To develop a good plan for a worker with a disability, three documents are essential: a) up-to-date job description; b) clinician's functional recommendations; c) written accommodation record. Medical information must be limited to work restrictions (e.g., maximum travel time, lifting limits, rest needs, exposure limits, etc.). This information must be stored separately from personnel files that contain normal information about workers.

Managers need to be given practical ways in which to manage employees with heart conditions rather than a long list of symptoms of heart conditions. For example: no overnight travel for 12 weeks; 1 rest break every 2 hours; remote work on infusion days and on clinic days. It is also very important to note the dates of reviews, as treatment can improve an employee's function and also reveal new limits on that employee's physical and mental stamina.

Screening and Documentation for ATTR Cardiac Amyloidosis

For employees with ATTR Cardiac Amyloidosis being evaluated, a timeline of blood tests, cardiac imaging, genetic testing, and review of their current medications is key for employers to plan for periods of time when employees will have to come in for a burst of appointments rather than just one absence. A code on a shared calendar such as "medical leave-approved" can help protect employees' privacy while enabling their teams to plan around their absences.

Family Risk Planning for Hereditary Cardiac Amyloidosis

As the diagnosis of a family member with Hereditary Cardiac Amyloidosis can prompt other relatives to get tested, it is best to avoid asking about family members or genetic results. If you offer genetic counseling as well as employee assistance services and/or pay for a specialist visit as part of your benefits package, let everyone know that you are offering these services on a broad basis.

Set Accommodations that Protect Output and Health

The strongest accommodations are those that are specific, measurable, and focused on an employee's essential duties. In addition to reducing avoidable strain, they must not relieve an employee of their accountabilities. Thus, a senior analyst may need to have the camera turned off during presentations for recovery breaks, while a field engineer may need to be assigned locally for some period of time until his/her symptoms stabilize.

Assume that the symptoms are triggered by work patterns (e.g. exertion, heat, risk of dehydration, long commutes, irregular meals, late nights) and build appropriate accommodations around these. First Plan should be kept short (e.g. 30-90 days) and then revised on the basis of attendance data, performance needs and most up-to-date clinical advice.

• Provide the option of remote or hybrid work on high-symptom days where duties permit.
• Instead of long travel days, consider holding video meetings or doing coverage swaps within regions.
• Tackle tough work or projects first thing in the morning, since your tiredness will probably get worse by the afternoon.
• Provide close parking, lift access, and reduce walking between sites.
• Cross-train one backup to perform time-sensitive duties before an absence becomes an urgent situation.

So, while it is true that Accommodation does not mean 'dumbing down', much of what we do can be adapted to better support someone's needs. Thus, that weekly four-hour standing meeting could easily be changed to 2 x video conferences. It saves their heart, and supports their productivity.

Coordinate Benefits, Privacy, and Specialist Care

A single diagnosis of cardiac amyloidosis can generate a lot of expense: expensive medicines, repeated scanning, specialists' appointments, and processing of the employee's disability. By clearly informing the employee before a crisis about his/her sick leave, short-term disability, Flexible Spending Accounts, business travel and return-to-work policies and procedures, HR can alleviate a great deal of fear and avoid that unfortunate resignation.

Discipline for protecting privacy is also key. Managers only need to know about restrictions and about emergency responses. They do not need to know about test results or a diagnosis and prognosis. If coworkers ask why someone is no longer on a particular schedule, the best response would be something like: "We're making some adjustments to coverage for an approved medical reason."

Choosing Referral Pathways that Shorten Delays

Early and accurate diagnosis of cardiac amyloidosis can be facilitated by referring employees to specialist centers where this often-missed diagnosis of routine heart failure can be identified. Employees and their families can access information on Second Opinions, Latest Imaging, Clinical Trials, and a host of other diagnostic and management options at centers such as Cardiac Amyloidosis Mount Sinai. Importantly, employers can support their employees by granting flexibility in relation to scheduled appointments to allow time for discussion with employees' own clinicians about appropriate treatment choices.

As the treatment plan for an employee with ATTR cardiac amyloidosis progresses, the employee's workload tolerance may change. The employee should be asked to provide updated functional guidance as the treatment progresses (e.g., after starting medication, after fluid levels are adjusted). Short check-ins (e.g. every 2 weeks) during periods of transition can help to identify and address problems before they become performance problems.

Bottom line: Effective Strategies for Managing Cardiac Amyloidosis in Business

In summary, a business handles the cardiac manifestation of amyloidosis conditions well when it treats the condition as a health issue and as an operational planning issue. The best response includes privacy, task-based accommodations, manager training on issues related to the employee with amyloidosis, clarification of the benefits available to employees with amyloidosis, and regular review of the issues and accommodations for the employees with amyloidosis. Waiting until the employee's performance starts to collapse is unfair to the employee and can be risky for the company.

Begin with identification of job essential functions. Obtain work-related medical guidance and develop a flexible plan, including dates and responsibilities. The plan will need to be revisited as the employee's symptoms evolve, as they are undergoing treatment, and as business needs change. The employee will retain dignity and purpose while the organization is able to maintain continuity without being in violation of medical or legal issues.

Frequently Asked Questions

Can an employee keep working after a cardiac amyloidosis diagnosis?

Most employees can continue to work in jobs that are within their limits while they are experiencing symptoms of their illness. It is safest to have a written plan that outlines travel to work, breaks during the day, physical demands of the job, and a review date to revisit the plan as treatment takes effect and work demands change.

What workplace accommodations are most useful?

A combination of flexible work arrangements, such as work flexibility, remote work, reduced travel, parking closer to work, rest time and adjustments to physical demands of work can be useful. The combination will depend on the key tasks of work, the pattern of symptoms and advice from the employee's doctor. Employers should not adopt the work arrangements of another employee with a similar condition without review.

Should HR request detailed medical records?

Functional restrictions vs. full medical records. A work-focused note can outline lifting, travel, standing, driving and hours limitations without HR requesting (and management reading) test results, genetic information or treatment details.

Where can leaders find specialist guidance?

Many specialist programs, cardiology teams and major amyloidosis centers have programs and employees to discuss a diagnosis and the treatment options with the employee's clinicians. We refer to Mount Sinai for cardiac amyloidosis for expert care and second opinions.

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