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Information About COVID-19 for Sickle Cell Disease Patients
HOME » INFORMATION ABOUT COVID-19 FOR SICKLE CELL DISEASE PATIENTS


COVID-19, short for coronavirus disease 2019, is an infection caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). SARS-CoV-2 is a newly identified pathogen that has not previously been seen in humans and is highly contagious. Though it belongs to the same category of viruses as SARS coronavirus (SARS-CoV) and influenza viruses, SARS-CoV-2 is a different strain with its own characteristics.
COVID-19 was first reported in Wuhan, China, in December 2019, and the outbreak has spread quickly across the world, prompting the World Health Organization (WHO) to declare COVID-19 a pandemic.
How does COVID-19 spread?
Because COVID-19 is a new virus, nobody has prior immunity to it, meaning the entire human population is prone to infection.
COVID-19 is primarily spread via respiratory droplets when people cough or sneeze. Scientists have yet to understand how easily and sustainably the disease can spread among people. Based on available evidence, researchers do not think that airborne spread is a major transmission route.
Individuals over age 60 are also at the highest risk of developing a severe case of COVID-19, while children do not seem to be at a higher risk than adults.
There are currently no reports about how susceptible pregnant women may be to COVID-19 or about the transmission of the virus through breast milk.
What are the symptoms of COVID-19?
Common symptoms of COVID-19 begin two to 14 days after exposure. They include fever, tiredness, and dry cough. Other symptoms include sputum production, shortness of breath, sore throat, headache, myalgia (muscle pain) or arthralgia (joint pain), chills, vomiting, and nasal congestion. Less frequent symptoms include diarrhea, hemoptysis (coughing up blood from the respiratory tract), and conjunctival congestion.
Most of these symptoms are usually mild, and about 80% of people who get the virus will typically recover without needing any special treatment. However, about 1 in 6 patients become seriously ill and develop breathing difficulties.
What general preventive measures should people take?
The following simple preventive measures can help minimize the spread of COVID-19:
  • Wash your hands often with soap, lathering both the front and the back of the hands and fingers for at least 15 to 20 seconds. If soap is not available, use a hand sanitizer that contains at least 60% alcohol. The European Centre for Disease Prevention and Control produced a poster detailing effective handwashing.
  • Avoid close contact with someone who is ill. (Maintain a distance of at least 6 feet, or 1.8 meters).
  • Stay at home if you are sick.
  • Use a tissue to cover your mouth and nose if you cough or sneeze and dispose of it properly afterward.
  • Disinfect surfaces and objects you touch frequently.
  • Avoid touching your eyes, nose, and mouth with unwashed hands.
What extra precautions should sickle cell disease patients take?
Individuals of any age with blood disorders such as sickle cell disease may be at an increased risk of developing serious COVID-19 symptoms. These individuals should follow general guidelines to keep their immune systems strong.
The U.S. Centers for Disease Control and Prevention (CDC) advises patients living with a chronic disease to stock up on essential medicines and supplies that can last for a few weeks. It also recommends social distancing and avoiding crowds and non-essential travel to prevent the spread of the virus.
Patients should consult their healthcare providers if they show any COVID-19-like symptoms.
Advice for family members and caregivers
Family members and caregivers of people with sickle cell disease should take appropriate precautions and extra care to avoid bringing COVID-19 home. They should constantly monitor patients.
They should wear gloves when coming in contact with blood or body fluids of patients with a COVID-19 infection and thoroughly wash clothes and highly-touched surfaces such as counters, doorknobs, bathroom fixtures, and toilets.
If family members and caregivers show symptoms of COVID-19 themselves, they should avoid coming in contact with the patient until the self-isolation period is complete.
What tests are available?
The CDC has developed a diagnostic panel that is available to CDC-qualified laboratories in the U.S. The U.S. Food and Drug Administration (FDA) has not approved this test but has made it available under a special emergency use authorization.
Apart from the tests made available by the CDC, several new tests are being continuously developed. One such recently available test is the cobas SARS-CoV-2 test developed by Roche Diagnostics. The cobas test has also received emergency use authorization from the FDA. The U.S. Department of Health and Human Services is funding the development of two other diagnostic tests that can detect the presence of SARS-CoV-2 within one hour.
An updated list of the various manual and automated tests that are available or are currently in development can be found here.
Samples for initial diagnostic testing include swabs from the upper respiratory tract such as the nose and throat and, if obtainable, from the lower respiratory tract such as the sputum.
A positive test result means infection with SARS-CoV-2 is confirmed. In such a situation, doctors place the patient under isolation. While a negative test indicates the absence of the virus, there is still a likelihood of false negatives, especially in the early stages of infection, where the number of viruses is too low to be detectable. A negative test in a person who clearly shows COVID-19-like symptoms mostly indicates that SARS-CoV-2 is not the cause of his or her illness.
What should sick individuals do?
If symptoms are present and a COVID-19 diagnosis is confirmed, patients should follow these steps to prevent the spread of the infection:
  • Stay at home, preferably in a separate room not shared with others, and isolate yourself, with the exception of getting medical care.
  • Avoid public areas and public transport.
  • Limit contact with pets and animals.
  • Avoid sharing personal items.
  • Cover coughs and sneezes with tissues and dispose of them properly.
  • Sanitize hands regularly.
  • Disinfect surfaces such as phones, keyboards, toilets, and tables.
People should call ahead before visiting the hospital for an appointment. This way, the hospital can take necessary steps to prevent the spread of the infection.
Patients who have confirmed COVID-19 should wear face masks when going out. The WHO has a resource explaining the proper use of a face mask. The CDC does not recommend that healthy people wear a face mask.
Is there a treatment?
There are currently no vaccines available for human coronaviruses including COVID-19. This makes the prevention and containment of the virus very important.
Oxygen therapy is the major treatment intervention for patients with severe disease. Mechanical ventilation may be necessary in cases of respiratory failure.
Is there any new research?
The first clinical trial of a possible treatment for COVID-19 has begun in the U.S. The National Institute of Allergy and Infectious Diseases is sponsoring a randomized, controlled Phase 2 trial to evaluate the safety and efficacy of the broad-spectrum anti-viral treatment remdesivir by Gilead Sciences to treat the disease.
Gilead has also launched two Phase 3 trials to evaluate remdesivir’s safety and efficacy in adults with COVID-19. These trials aim to recruit approximately 1,000 patients across Asia and other countries. Gilead is supplying remdesivir free of charge for two other trials in China.
Other treatments being investigated for COVID-19 include a novel mRNA-1273 nanoparticle-encapsulated vaccine (NCT04283461), thalidomide (NCT04273581), sildenafil (NCT04304313), eculizumab (NCT04288713), recombinant human interferon-alpha 1 beta (NCT04293887), bevacizumab (NCT04305106), and antibodies from cured patients (NCT04264858), among others.
A complete list of all ongoing clinical trials pertaining to COVID-19 is available here.
Researchers are also looking at new synthetic biology approaches by using self-assembling nanoparticles coated with viral antigens that can precisely target SARS-CoV-2. This approach can potentially overcome some of the limitations of conventional vaccines such as short shelf-life and viral evolution.

Last updated: March 18, 2020
 

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Coronavirus (COVID-19) & Sickle Cell Disorder
This page provides the latest information and guidance regarding coronavirus (COVID-19) and sickle cell. [Updated 27/03/2020]
Contents

What is Coronavirus (COVID-19)?
COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a virus called coronavirus.
The main symptoms include high temperature and/or new and continuous cough.
The current risk level in the UK is high.
As the illness is new, there is limited specific information for people living with sickle cell. However, below we have included all the available specific information there is and included the official guidance on avoiding catching or spreading germs and what to do if you need medical help, which all apply.

Guidance Overview
Here is an overview of the types of guidance and who they apply to:
  • For everyone: Stay at home – this includes anyone with sickle cell trait (sickle cell carriers)
  • For all patients with a sickle cell disorder (e.g. HbSS, HbS Beta thalassaemia, HbSC, HbSD, HbSO): Shielding
More details around each section of guidance can be found further down in this article

Stay at Home
The most recent guidance from the government is that everyone should stay at home except for just a few reasons. In order to keep people safe, the government has implemented three new measures:
  1. Everyone should stay at home, except for very limited purposes (see below)
  2. Non-essential shops and community spaces will be closed
  3. All gatherings of more than two people in public will be stopped.
There are four exceptions to the stay at home guidance:
  1. Shopping for basic necessities (for example food and medicine, which must be as infrequent as possible)
  2. One form of exercise a day (for example a run, walk, or cycle – alone or with members of your household)
  3. Any medical need, or to provide care or to help a vulnerable person
  4. Travelling to and from work, but only where this absolutely cannot be done from home

Click here to find out more about the governments stay at home guidance

Shielding
The latest government guidance strongly advises people with serious underlying health conditions (click here to see the full list of extremely vulnerable groups) to rigorously follow shielding measures in order to keep themselves safe.
This includes all patients with sickle cell (e.g. HbSS, HbS Beta thalassaemia, HbSC, HbSD, HbSO).
Please note that this does not apply to people with sickle cell trait (sickle cell carriers) – read more about trait here
The NHS in England or your hospital care team are directly contacting people with these conditions to provide further advice. If you have a sickle cell disorder and you have not been contacted by Sunday 29 March 2020 or been contacted by your GP, you should discuss your concerns with your hospital care team or GP by calling them.
What is Shielding?
Shielding is a measure to protect extremely vulnerable people by minimising interaction between those who are extremely vulnerable and others.
If you fall into an extremely vulnerable group (sickle cell disorder), you are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks from the day you are contacted by the NHS or your hospital care team as long as it is safe to do so. If you become unwell during this time you must contact your hospital care team for advice as usual to be sure that you receive the right treatment for your sickle cell disorder. In a medical emergency call an ambulance on 999.
Below is further guidance on shielding:
  • Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19) – high temperature and/or new and continuous cough
  • Do not leave your house
  • Do not attend any gatherings (including gatherings of friends and families in private spaces for example family homes, weddings and religious services)
  • Do not go out for shopping, leisure or travel
  • Food or medication deliveries should be left at the door to minimise contact
  • Keep in touch using remote technology such as phone, internet, and social media
Visits from people who provide essential support to you such as healthcare, personal support with your daily needs or social care should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus (COVID-19). You may find this guidance on home care provision useful. All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often whilst they are there.
Living with Other People
We know that many people live with others and may be concerned about how to effectively shield whilst sharing a house or flat. Below is guidance if you have a sickle cell disorder and you live with other people.
Although the other people you live with do not need to follow shielding guidelines (unless they also fall into an extremely vulnerable category – click here to see the full list) everyone in the house should do what they can to support you in shielding and strictly follow the specific advice below and general social distancing advice (found later in this article).
  • Try to minimise the time spent with other people in shared spaces (kitchens, bathrooms, sitting areas)
  • Keep shared spaces well ventilated
  • Aim to keep 2 metres (3 steps) away from people you live with and encourage them to sleep in a different bed where possible
  • If possible, use a separate bathroom from the rest of the household
  • If you do share a toilet and bathroom with others, it is important that they are cleaned after use every time (for example, wiping surfaces you have come into contact with)
    • Use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes
    • Another tip is to consider drawing up a rota for bathing, with you using the facilities first
  • If you share a kitchen with others, avoid using it while they are present
    • If you can, you should take your meals back to your room to eat
  • If you have one, use a dishwasher to clean and dry the family’s used crockery and cutlery. If this is not possible, wash them using your usual washing up liquid and warm water and dry them thoroughly
    • If you are using your own utensils, remember to use a separate tea towel for drying these.
We understand that for many people it will be difficult to separate themselves from others they live with. Try as best you can to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.
Getting help with food, shopping and medicine
To continue to get food, shopping and medicine you should ask your family, friends and neighbours to support you and use online services.
If this option is not available then the public sector, business, charities, and the general public are gearing up to help those advised to stay at home.
During this time of staying at home (shielding) please speak to those you trust on how they can support you (family friends, carers, neighbours, and community groups).
From Tuesday 24th March 2020, if you are in the extremely vulnerable group (sickle cell) you will be able to apply for support (including food, shopping and additional care).
Please visit https://www.gov.uk/coronavirus-extremely-vulnerable to find out more.
Prescriptions
During this period, prescriptions will continue to be provided as usual. If you do not currently have your prescriptions collected or delivered, you can arrange this by:
  • Asking someone who can pick up your prescription from the local pharmacy, (this is the best option, if possible)
  • Contacting your pharmacy to ask them to help you find a volunteer (who will have been ID checked) or deliver it to you
  • You may also need to arrange for collection or delivery of hospital specialist medication that is prescribed to you by your hospital care team
Care support from your local authority or health care system will continue as normal, with additional precautions being made to make sure that you are protected.
Click here to find out more about Home Care Provision
Hospital and GP Appointments
Where possible, try and access medical assistance remotely. Hospital care teams are offering most patients telephone or video consultations during the COVID-19 outbreak.
If you have a scheduled hospital or other medical appointment and have not been contacted by your GP or specialist about this, call them before attending to confirm that the appointment has not been canceled or postponed. Talk to them about how best to ensure you can continue to receive the care you need.
Click here to find out more about shielding and any concerns you have

Social Distancing
The government is now advising those who are at increased risk of severe illness from coronavirus (COVID-19) to be particularly stringent in following social distancing measures (click here to see the full list of vulnerable groups).
What is social distancing?
Social distancing is a way of reducing your social interaction with people and therefore helping to reduce the spread and risk of coronavirus (COVID-19).
Social Distancing includes:
  • Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough;
  • Avoid non-essential use of public transport, varying your travel times to avoid rush hour, when possible. Work from home, where possible. Click here to find out more about how your employer can support
  • Avoid large gatherings, and gatherings in smaller public spaces such as pubs, cinemas, restaurants, theatres, bars, clubs
  • Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media.
  • Use telephone or online services to contact your GP or other essential services.
This advice is likely to be in place for some weeks and we will regularly update this page with any new information.
Click here to find out more about social distancing
Children and Schools
The new government guidance says that schools will close from Monday 23rd March 2020 (and will remain closed until further notice). The exception for this is children of key workers (e.g. NHS staff, police and supermarket delivery drivers) and vulnerable children (children with a social worker and those with Education, Health and Care Plans).
Click here to find out more about school closures
Sickle Cell Trait
If you have sickle cell trait please follow the guidance given to the general public. This doesn’t make you more vulnerable to coronavirus infection but do check the full vulnerable groups list in case you fall into another category such as if you have had your spleen removed, are pregnant or aged over 70). The full vulnerable groups list can be found here.
General Advice about Feeling Unwell
If you are mildly unwell with a cough or fever below 37.8 oC you should manage your illness at home and not go to your GP or A&E. If you are worried about your symptoms you should call your hospital care team for advice.
If you suspected you have any symptoms of COVID-19 (high temperature and/or new and continuous cough) please contact your centre (even if you have called 111) of care to ensure that you receive the appropriate specialist advice on the need for further assessment.
Due to the impact other infections can have on people living with sickle cell (including pneumonia and acute chest syndrome) anyone with a sickle cell disorder who has a worsening cough, difficulty in breathing or fever above 38 oC should urgently contact their centre of care or in an emergency 999. Mention you are worried about coronavirus but also that you have sickle cell disorder. They will then instruct you further.
Sickle Cell Pain (Crisis)
If you are experiencing severe sickle cell pain (crisis) then go to hospital as normal. However, if you also have a cold, a high temperature or new and continuous cough contact your centre of care (or 999 in an emergency) first.
Taking medicines during the COVID-19 outbreak
If you are taking hydroxycarbamide or iron chelators (drugs to remove excess iron) it is important these are continued. Your centre of care will make arrangements to monitor this treatment through the hospital or your GP. There is no evidence these drugs affect the risk of COVID-19 one way or the other. However there is some concern that anti-inflammation pain killers like ibuprofen might make coronavirus infection worse. During the COVID-19 outbreak it is recommended that you take paracetamol (unless you have an allergy to it) which is safe instead.
Official guidance and information can be found here:
NHS https://www.nhs.uk/conditions/coronavirus-covid-19/
GOV.UK https://www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response
Here are a few important bits of guidance which you can follow:
To avoid the catching or spreading of germs:
Do:
  • cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • put used tissues in the bin immediately
  • wash your hands with soap and water often – use hand sanitiser gel if soap and water are not available
  • try to avoid close contact with people who are unwell
Don’t:
  • do not touch your eyes, nose or mouth if your hands are not clean
The NHS have a specific service for people who think they might have coronavirus. You can find out more about it here: https://111.nhs.uk/covid-19
 

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COVID-19, Sickle Cell Disease, and a Critical Need

Respiratory viruses are known to cause severe complications in people with sickle cell disease, many of whom already face significant challenges.
Getty Images
Amy Sobota, MD, MPH
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March 25, 2020

We are facing a global pandemic as cases of COVID-19, the disease caused by the novel coronavirus, rise around the world. More severe disease, including respiratory failure and the need for mechanical ventilation, is seen in patients with co-existing illnesses. Individuals with sickle cell disease (SCD) are a particularly vulnerable group of patients, with a higher risk of severe complications than the general public.
Sickle cell disease is an inherited disorder causing normal red blood cells to deform into stiff, crescent shapes that get stuck in small blood vessels blocking blood flow and oxygen delivery to many parts of the body. This ‘sickling’ is triggered by events such as viral illnesses, cold weather, stress, and low oxygen, among others. If this sickling happens in the lungs, it triggers a cascade of events that causes a severe complication called acute chest syndrome.
What is acute chest syndrome? When a respiratory illness causes poor oxygenation in areas of the lungs, it causes more sickling, which impedes blood flow, which in turn causes low oxygen levels, which then leads to sickling…and so on. This, combined with the original respiratory infection in a person with sickle cell disease, is called acute chest syndrome, and is one of the leading causes of death in people with SCD.
While there is no data yet on sickle cell disease and COVID-19, we know that other respiratory viruses cause more severe complications in people with sickle cell disease, including higher rates of hospitalizations, acute chest syndrome, and need for mechanical ventilation. This is true every year for seasonal influenza and was even more pronounced during the H1N1 outbreak. We have every reason to believe that the novel coronavirus, which has been shown to cause respiratory failure especially in people with underlying illnesses, will be even more serious for people with sickle cell disease.
"We have every reason to believe that the novel coronavirus will be even more serious for people with sickle cell disease."CLICK TO TWEET
Among other reasons, patients with sickle cell disease are at increased risk because they are in more frequent contact with the hospital than other individuals. Providers and patients thus face the difficult choice of deciding when to try to manage symptoms at home and when to come in to be seen. At Boston Medical Center, where I'm a pediatric hematologist, we have converted many visits to telehealth via phone or video to prevent exposure as much as possible.
But some patients still need to be seen for preventative visits or acute crises, thus putting them at higher risk of contracting the virus. One group of patients who must still come in are those on chronic transfusions to prevent stroke or other complications of their disease. However, we are also facing a critical shortage in our transfusion blood supply as donation rates are down in these times of social distancing.
Like all of us, patients with SCD have been encouraged to maintain social distancing, stay home from work and school, and avoid groups in order to prevent exposure. But this may be more difficult for many of our patients who live in poverty, who don't have jobs that can be done remotely, or who live in crowded conditions such as shelters. Patient families who have found themselves unable to work are at higher risk of housing and food insecurity without their income. We’re already hearing of patients facing eviction and running out of food for their families because they can't work.
While the economic impact of this pandemic is a concern for many, patients and families of those with SCD were already grappling with unmet needs. The COVID-19 outbreak only stands to exacerbate these challenges that can disrupt health.
Supporting these patients requires diligence not only from healthcare providers, but the public. Here's how to help:
 

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March 17, 2020 – With COVID-19 on the forefront of nearly everyone’s minds, the Medical and Research Advisory Committee (MARAC) at SCDAA wants to provide information to our sickle cell community. Educating yourself about the coronavirus reduces anxiety and empowers you to protect yourself – and your family – from getting sick. The potential health risk posed by COVID-19 is a real concern. The knowledge we have about how COVID-19 will affect those living with sickle cell disease is evolving constantly. In light of this, the risks to our community here in the United States may change in the upcoming days, weeks and months. It is critical that you stay regularly informed.
MARAC is in constant communication with health authorities across the globe as well as international sickle cell specialists who are taking care of individuals living with sickle cell disease. We will continue with regular updates for the community based on evidence and detailed accounts of the impact in countries who have struggled longer than we have.
What You Need to Know About the Coronavirus (COVID-19)
The pandemic is real
. This is not an exaggeration of the facts. This is not “fake news”. We are all at risk of getting infected. Individuals with sickle cell disease have weaker immune systems than most other people. The best way to prevent serious illness is to keep from getting infected in the first place.
Frequently Asked Questions
What can I do to prevent the spread of COVID-19?

Here are some tips:
  • Stay home as much as possible. Do not leave home unless absolutely necessary.
  • Wash your hands with soap and water for 20 seconds (don’t stop until you finish singing the “Alphabet song”) or use hand sanitizer with at least 60% alcohol.
  • Avoid touching your eyes, nose, mouth, and face.
  • If you feel sick, call your medical provider immediately.
  • Avoid being close to people who are visibly sick, coughing, or sneezing.
  • Greet one another from a distance (no hugs or handshakes).
  • Disinfect frequently touched objects and surfaces. The virus can live on these surfaces and get transmitted this way.
  • Cover your cough or sneeze with a tissue you can discard, then immediately wash your hands.
How can I get myself and my family prepared?
  • Please check to see if you have refilled all your (your child’s) medication and are not about to run out.
  • Contact your (your child’s) doctor to ask about getting extra medications to have on hand in case there is an outbreak of COVID-19 in your community and you need to stay home for a long period of time. Some pharmacies are offering home delivery.
  • Be sure you have over-the-counter medicines and medical supplies (e.g. tissues) to treat fever (e.g. Tylenol) and other symptoms.
  • Make sure you have a thermometer to take your temperature.
  • Take your prescribed medications for sickle cell disease (Hydroxyurea, glutamine, penicillin, folic acid, Voxelotor, Crizanlizumab, Deferasirox, and any others). These medications will help keep your body in the best possible condition to fight off infection.
  • Have enough household items and groceries on hand so that you will be prepared to stay at home for a period of time that could be many weeks.
  • Stay in touch with others by phone or email. You may need to ask for help from friends, family, neighbors, etc. if you become ill.
  • Think ahead about who will watch your children, other loved ones, or pets if you become too sick.
  • Find out if working from home is an option.
How do I know if I have COVID-19?
The only way to know for sure that you have coronavirus is to get tested. However, it is not easy to get tested yet as all 50 states have limited access to testing kits. We hope that this will change soon.
Most people who have COVID-19 have the following symptoms:
  • Fever
  • Cough
  • Shortness of breath
If you have any of these symptoms, call your doctor right away to discuss what you should do next.
Call 911 if you have:
  • A lot of difficulty breathing
  • Unusual persistent pain or pressure in the chest
  • New confusion or inability to wake up easily
  • Bluish lips or face
What should I do if I have a fever?
Do not immediately rush to the emergency department. You should call your doctor right away if you have a fever and you should use a thermometer to be sure you really do first. This is key. Lots of different infections can cause a fever. This does not automatically mean you have COVID-19. Call your doctor first and find out where to go. They will ask about other symptoms too.
What are some good ways to stay as healthy as possible?
  • Take your medications as prescribed
  • Stay hydrated
  • Try to get good rest
Should I continue getting my chronic transfusions?
Continue all of your treatments until you talk it over with your doctor. There is no evidence right now that COVID-19 is transmitted through blood but there is a lot we still do not know. Balancing the need for transfusions to reduce things like stroke must be taken into consideration when making this decision. If you have concerns with going in for your transfusion, you should ask your doctor about any risks of missing a transfusion. If there is a shortage of blood supply in your region, ask your provider if there is any alternative. Bottom line is talk to your doctor.
What do I do if I don’t have a doctor?
Many of our healthcare centers are setting up ways for patients to have a visit with a healthcare provider over the telephone. These are called “e-visits” or sometimes referred to as “telemedicine”. Many states and local communities have hotlines available for people to call for help and advice. If you are unsure, you can always call your local SCDAA chapter for advice on resources in your community.
Should I go to the emergency department if I am ill?
If you have a doctor, it is recommended that you call for advice if you can before going to the emergency department. Emergency departments are very full right now and it is likely that there will be long waits. Also, it is very likely that infected people will be there. If you have no other option, then going to the emergency department is the best option, but please use your other options first.
I think I am having a pain crisis episode. What should I do?
Carefully weigh your options and call your doctor to get advice on what to do. Consider the benefit of managing pain at home versus the risk of getting exposed to someone with COVID-19 in the clinic, emergency department or hospital. If it feels like a typical pain crisis episode for you, they may suggest you try to do everything you can to manage your pain at home. If you are comfortable trying to manage at home, ask your doctor to call in prescriptions for pain medications. If you have symptoms of COVID-19, you should alert your doctor and say, “This feels different from my usual pain crisis” and ask what you should do next. Make sure you have checked your temperature because you will be asked if you did.
Is it safe to travel?
It is best to avoid all non-emergent travel at this time. If you must travel, visit the CDC’s website for travel guidance (www.cdc.gov/covid19) to stay up to date.
Have any individuals with sickle cell disease been diagnosed with COVID-19?
Yes, we are aware that some have. We are not aware of any deaths among those living with sickle cell disease. This could change.
What do I do if I am on a clinical trial?
Thank you for being on a clinical trial. It is important that you get in touch with your research team right away to check if there are any changes.
I feel fine so far. Is there anything I can do to help others?
If you know others living with sickle cell disease, contact them by phone, text or social media. Make sure they are doing ok and see if they need help or reassurance. It is a stressful time for a lot of us. If you know people who are willing to donate blood, encourage them.
Will there be a shortage of blood soon?
This is very possible, but you can help! If there are people in your family or community that are willing to donate blood, please encourage them to call the local blood bank right away. During times like these, there can be a lot of blood shortages and we know that many people with sickle cell disease (as well as other conditions) need blood. See if you can get some people to donate.
How do I stay informed?
  • Go to OneSCDVoice.com, SCDAA’s online information superhighway where we will post updates regularly that are specific to sickle cell disease. It is free to join. We are not aware of any other more trusted resource specifically for individuals with sickle cell disease.
  • Go to the CDC’s website (cdc.gov/covid19)for regular updates on the COVID-19. Information is updated routinely and will keep you abreast of the latest guidelines and recommendations. There is information on how you can start to prepare in your homes and community.
Definitions
Pandemic – A worldwide outbreak of a disease
For More Information, contact info@sicklecelldisease.org

SCDAA Medical and Research Advisory Committee Members
Miguel R Abboud, MD

Professor of Pediatrics and Pediatric Hematology-Oncology
Chairman
Department of Pediatrics and Adolescent Medicine
American University of Beirut, Lebanon
Biree Andemariam, MD
Chair, Medical and Research Advisory Committee, Sickle Cell Disease Association of America
Chief Medical Officer, Sickle Cell Disease Association of America
Director, New England Sickle Cell Institute
Associate Professor of Medicine
University of Connecticut Health
Farmington, CT 06030
Shawn Bediako, PhD
Associate Professor
Department of Psychology
University of Maryland Baltimore County
Baltimore, Maryland
Andrew Campbell, MD
Center for Cancer and Blood Disorders
Children’s National Health System
Associate Professor of Pediatrics
George Washington University School of Medicine and Health Sciences
Washington, DC
Raffaella Colombatti, MD, PhD
Physician Azienda Ospedaliera-Università di Padova
Department of Womens’ and Child Health
Clinic of Pediatric Hematology Oncology
Via Giustiniani 3
35129 Padova Italy
Lori Crosby, PsyD
Co-Director, Innovations in Community Research, Division of Behavioral Medicine & Clinical Psychology
Co-Director, CCTST, Community Engagement Core
Psychologist, Research, Behavioral Medicine & Clinical Psychologist
Cincinnati Children’s
Professor, UC Department of Pediatrics
Cincinnati, OH
Deepika Darbari, MD
Center for Cancer and Blood Disorders
Children’s National Health System
Associate Professor of Pediatrics
George Washington University School of Medicine and Health Sciences
Washington, DC
Payal Desai, MD
Associate Professor
Director of Sickle Cell Research
The Ohio State University
James Care at Ohio State East Hospital
181 Taylor Avenue, Columbus, Ohio 43203
James Eckman, MD
Professor Emeritus, Hematology & Medical Oncology
Emory University School of Medicine
Department of Hematology and Medical Oncology
49 Jesse Hill Jr. Drive SE
Atlanta, GA 30303
Mark Gladwin, MD
Professor and Chair
Department of Medicine
Founder, Pittsburgh Heart, Lung, and Blood Vascular Medicine Institute
University of Pittsburgh
E1240 BST
200 Lothrop Street
Pittsburgh, PA 15261
Jo Howard, MB Bchir, MRCP, FRCPath
Head of Red Cell/Sickle Cell Service
Guy’s and St Thomas’
NHS Foundation Trust
Great Maze Pond
London, United Kingdom
Lewis Hsu, MD, PhD
Co-Chair, Medical and Research Advisory Committee, Sickle Cell Disease Association of America
Vice Chief Medical Officer, Sickle Cell Disease Association of America
Director of Pediatric Sickle Cell
Professor of Pediatric Hematology-Oncology
University of Illinois at Chicago
Chicago, Illinois
Dr Baba Inusa
Honorary Reader in Paediatric Haematology, King’s College London
Lead Consultant Sickle Cell and Thalassaemia Service
Evelina London Children’s Hospital
St Thomas’ Hospital
Westminster Bridge Road, London SE1 7EH
Elizabeth Klings, MD
Associate Professor of Medicine, Boston University School of Medicine
Program Director, Center of Excellence in Sickle Cell Disease
Director, Pulmonary Hypertension Inpatient and Education Program
Medical Director, Pulmonary Rehabilitation Program, Boston Medical Center
72 East Concord Street, R-304
Boston, MA 02118
Lakshmanan Krishnamurti, MD
Professor of Pediatrics, Director of BMT
Joseph Kuechenmeister Aflac Field Force Chair
Aflac Cancer and Blood Disorders Center
Children’s Healthcare of Atlanta/Emory University
Atlanta, GA
Sophie Lanzkron, MD, MHS
Director, Sickle Cell Center for Adults
The Johns Hopkins Hospital
1800 Orleans St
Baltimore, MD 21287
Caterina P. Minniti, MD
Director, Sickle Cell Center
Montefiore Health System
Professor of Medicine and Pediatrics
Albert Einstein College of Medicine
Bronx, NY
Genice T. Nelson, DNP, APRN, ANP-BC
Program Director
New England Sickle Cell Institute & Connecticut Bleeding Disorders Programs
UConn Health
Farmington, CT 06030
Board Member, Sickle Cell Disease Association of America
Isaac Odame, MB ChB, MRCP(UK), FRCPath, FRCPCH, FRCPC
Professor, Department of Paediatrics
University of Toronto
The Hospital for Sick Children
Division of Haematology/Oncology
555 University Avenue
Toronto, Ontario M5G 1X8
Gwendolyn Poles, D.O.
Honorary Medical Staff Member
Former Medical Director, Kline Health Center
Faculty, Internal Medicine Program
UPMC Pinnacle
Harrisburg, PA
Board Member, Sickle Cell Disease Association of America
John Roberts, MD
Yale Adult Sickle Cell Program
Smilow Cancer Hospital at Yale New Haven
35 Park Street, Ste 7th floor, Multispecialty
New Haven, CT 06511
Wally Smith, MD
Professor
Scientific Director, VCU Center on Health Disparities
Director, VCU Adult Sickle Cell Program
Department of Internal Medicine
Division of General Internal Medicine
West Hospital W10W-403
P.O. Box 980306
Richmond, VA 23298
Crawford J Strunk MD
Pediatric Hematology/Oncology
Pediatric Hematology/Oncology Program at Toledo Children’s Hospital
2142 N. Cove Blvd.
Toledo, Ohio 43606
Immacolata Tartaglione, MD PhD
Department of Woman, Child and General and Specialist Surgery
Università degli Studi della Campania “Luigi Vanvitelli”
Naples, Italy
Marsha Treadwell, PhD
Director, Northern California, Network of Care for Sickle Cell Disease
Co-Principal Investigator and Regional Director, Pacific Sickle Cell Regional Collaborative
Director, Hematology Behavioral Services
Comprehensive Center for Sickle Cell Disease
Main Hospital
747 52nd Street
Oakland, CA 94609
Winfred C. Wang, MD
Member, Department of Hematology
St. Jude Children’s Research Hospital
262 Danny Thomas Place, MS 800
Memphis, TN 38105
Russell E. Ware, MD, PhD
Director, Division of Hematology
Institute Co-Director, Cancer and Blood Diseases Institute
Director, Global Health Center
Marjory J. Johnson Chair of Hematology Translational Research
Cincinnati Children’s
Professor, UC Department of Pediatrics
Cincinnati, OH
Julie Kanter Washko, MD
Associate Professor
Division of Hematology Oncology
University of Alabama at Birmingham
1720 2nd Avenue South, NP 2540
Birmingham, AL 35294-3300
Kim Smith-Whitley, MD
Professor of Pediatrics
Director Comprehensive Sickle Cell Center
Division of Hematology
11th Floor Colket Building
The Children’s Hospital of Philadelphia
34th & Civic Center Blvd.
Philadelphia, PA 19104
Board Member, Sickle Cell Disease Association of America
Wanda Whitten-Shurney, MD
CEO & Medical Director
Sickle Cell Disease Association, Michigan Chapter Inc.
Board Member, Sickle Cell Disease Association of America
Detroit, MI
Ahmar U. Zaidi, MD
Assistant Professor of Pediatrics
Comprehensive Sickle Cell Center, Children’s Hospital of Michigan, Wayne State University/Central Michigan University School of Medicine
Detroit, MD
 

dasmybikepunk

Wait for it.....
OG Investor
Who should not take Chloroquine Phosphate?
The following conditions are contraindicated with this drug. Check with your physician if you have any of the following:
Conditions:
  • glucose-6-phosphate dehydrogenase (G6PD) deficiency
  • porphyria
  • anemia
  • low levels of white blood cells
  • alcoholism
  • myasthenia gravis
  • a skeletal muscle disorder
  • maculopathy
  • changes in the visual field
  • hearing loss
  • abnormal EKG with QT changes from birth
  • liver problems
  • psoriasis
  • seizures
  • anemia from pyruvate kinase and G6PD deficiencies
Allergies:
  • 4-Aminoquinolines


Sickle cell anemia is caused by a mutation in the gene that tells your body to make the iron-rich compound that makes blood red and enables red blood cells to carry oxygen from your lungs throughout your body (hemoglobin).Jan 30, 2020


WTF is going on? Are they just going to keep ignoring the fact that:

Anemia, a disorder characterized by a lower-than-normal red blood cell count and insufficient hemoglobin levels, affects approximately 25% of the population or 1.6 billion people worldwide.


:smh::tut::itsawrap::sick:
 

playahaitian

Rising Star
Certified Pussy Poster

At 16, she’s a pioneer in the fight to cure sickle cell disease at Boston Children’s
Helen Obando is the youngest person ever to receive a gene therapy for sickle cell anemia.
Helen Obando, the youngest person ever to receive a gene therapy for sickle cell anemia, visits the New England Aquarium in Boston, Dec. 15, 2019. Experts say research into sickle cell disease has been hindered by chronic underfunding, in part because a vast majority of the those who suffer from it are African or of African descent, often poor or of modest means. (Hilary Swift/The New York Times)
SHARE TWEETCOMMENTS
By

Gina Kolata,

The New York Times Company
January 11, 2020
BOSTON — Helen Obando, a shy slip of a girl, lay curled in a hospital bed in June waiting for a bag of stem cells from her bone marrow, modified by gene therapy, to start dripping into her chest.
The hope was that the treatment would cure her of sickle cell disease, an inherited blood disorder that can cause excruciating pain, organ damage and early death.
Helen, who at 16 was the youngest person ever to undergo the therapy, was sound asleep for the big moment.
It was a critical moment in medical science.
For more than a half-century, scientists have known the cause of sickle cell disease: A single mutation in a gene turns red blood cells into rigid crescent or sickle shapes instead of soft discs. These misshapen cells get stuck in veins and arteries, blocking the flow of blood that carries life-giving oxygen to the body and causing the disease’s horrifying hallmark: episodes of agony that begin in babyhood.

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Millions of people globally, a vast majority of them Africans, suffer from sickle cell disease. Researchers have worked for decades on improving treatment and finding a cure, but experts said the effort has been hindered by chronic underfunding, in part because most of the estimated 100,000 people in the United States who have the disease are African American, often poor or of modest means.
The disease also affects people with southern European, Middle Eastern or Asian backgrounds, or those who are Hispanic, like Helen.
This is the story of two quests for a sickle cell cure — one by the Obando family and one by a determined scientist at Boston Children’s Hospital, Dr. Stuart Orkin, 73, who has labored against the disease since he was a medical resident in the 1970s.
Like many others affected by sickle cell, the Obando family faced a double whammy: not one but two children with the disease, Helen and her older sister, Haylee Obando. They lived with one hope for a cure, a dangerous and sometimes fatal bone marrow transplant usually reserved for those with a healthy sibling as a match. But then they heard about a potential breakthrough: a complex procedure to flip a genetic switch so the body produces healthy blood.
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Scientists have been experimenting with gene therapy for two decades, with mixed success. And it will be years before they know if this new procedure is effective in the long term. But if it is, sickle cell disease could be the first common genetic disorder to be cured by manipulating human DNA.
Four weeks after the infusion of stem cells, Helen was strong enough to be discharged. At home, in Lawrence, Massachusetts, on a sofa with her mother by her side, she put a hand over her eyes and started to sob. She and her family wondered: Would it work? Was her suffering really over?
A Family’s Nightmare
Sheila Cintron, 35, and Byron Obando, 40, met when she was in the eighth grade and he was a high school senior. They fell in love. Haylee, their first child, was born in 2001, when Cintron was 17.
When a newborn screening test showed that Haylee had the disease, her father asked, “What’s sickle cell?”
They soon found out.
As the family gathered for her first birthday party, Haylee started screaming inconsolably. They rushed her to the hospital. It was the first of many pain crises.
Doctors warned the parents that if they had another baby, the odds were 1 in 4 that the child would have sickle cell, too. But they decided to take the chance.
Less than two years later, Helen was born. As bad as Haylee’s disease was, Helen’s was much worse. When she was 9 months old, a severe blockage of blood flow in her pelvis destroyed bone. At age 2, her spleen, which helps fight bacterial infections, became dangerously enlarged because of blocked blood flow. Doctors surgically removed the organ.
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After Helen was born, her parents decided not to have any more children. But four years later, Cintron discovered she was pregnant again.
But they were lucky. Their third child, Ryan Obando, did not inherit the sickle cell mutation.
As Ryan grew up, Helen’s health worsened. When he was 9, Helen’s doctors suggested a drastic solution: If Ryan was a match for her, he might be able to cure her by giving her some of his bone marrow, though there would also be major risks for her, including death from severe infections or serious damage to organs if his immune system attacked her body.
As it turned out, Ryan matched not Helen but Haylee.
The transplant succeeded, but her parents asked themselves how they could stand by while one daughter was cured and the sicker one continued to suffer.
There was only one way to get a sibling donor for Helen: have another baby. In 2017, the couple embarked on another grueling medical journey.
Obando had a vasectomy, so doctors had to surgically extract his sperm from his testicles. Cintron had 75 eggs removed from her ovaries and fertilized with her husband’s sperm. The result was more than 30 embryos.
Not a single embryo was both free of the sickle cell gene and a match for Helen.
So the family decided to move to Mesa, Arizona, from Lawrence, where the cold, which set off pain crises, kept Helen indoors all winter. The family had already sold their house when they heard that doctors at Boston Children’s were working on sickle cell gene therapy.
Cintron approached Dr. Erica Esrick, a principal investigator for the trial. But the trial wasn’t yet open to children.
Figuring Out the Science
Nothing had prepared Orkin for the suffering he witnessed in his 30s as a medical resident in the pediatric hematology ward at Boston Children’s. It was the 1970s, and the beds were filled with children who had sickle cell crying in pain.
Orkin knew there was a solution to the puzzle of sickle cell, at least in theory: Fetuses make hemoglobin — the oxygen-carrying molecules in blood cells — with a different gene. Blood cells filled with fetal hemoglobin do not sickle. But the fetal gene is turned off after a baby is born, and an adult hemoglobin gene takes over. If the adult gene is mutated, red cells sickle.
Researchers had to figure out how to switch hemoglobin production to the fetal form. No one knew how to do that.
Orkin needed ideas. Supported by the National Institutes of Health and Howard Hughes Medical Institute, he kept looking.
The breakthrough came in 2008. The cost of gene sequencing was plummeting, and scientists were finding millions of genetic signposts on human DNA, allowing them to home in on small genetic differences among individuals. Researchers started doing large-scale DNA scans of populations, looking for tiny but significant changes in genes. They asked: Was there a molecular switch that flipped cells from making fetal to adult hemoglobin? And if there was, could the switch be flipped back?
They found a promising lead: an unprepossessing gene called BCL11A.
In a lab experiment, researchers blocked this gene and discovered that the blood cells in petri dishes started making fetal instead of adult hemoglobin.
Next they tried blocking the gene in mice genetically engineered to have human hemoglobin and sickle cell disease. Again, it worked.
Patients came next, in the gene therapy trial at Boston Children’s that began in 2018.
The trial — run by Dr. David Williams, an expert in the biology of blood-forming stem cells at Boston Children’s, and Esrick — has a straightforward goal: “We’re going to reeducate the blood cells and make them think they are still in the fetus,” Williams said.
Doctors gave adult patients a drug that loosened stem cells — immature cells that can turn into red blood cells — from the bone marrow, their normal home, so they floated free in the bloodstream. Then they extracted those stem cells from whole blood drawn from the patient.
The researchers used a disabled genetically engineered AIDS virus to carry information into the stem cells, flipping on the fetal hemoglobin gene and turning off the adult gene. Then they infused the treated stem cells into patients’ veins. From there, the treated cells migrated into the patients’ bone marrow, where they began making healthy blood cells.
With the success in adults, the Food and Drug Administration said Boston Children’s could move on to teenagers.
When her mother told her about the gene therapy trial, Helen was frightened. But the more she thought about it, the more she was ready to take the risk.
In the months after the gene therapy infusion at Boston Children’s, her symptoms disappeared.
Helen was scheduled for her six-month checkup Dec. 16. Helen’s total hemoglobin level was so high it was nearly normal — a level she had never before achieved, even with blood transfusions. She had no signs of sickle cell disease.
 

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ProMedica joins growing list of hospitals to add adult sickle cell treatment

BROOKS SUTHERLAND
The Blade


FEB 21, 2020

1:20 PM

For years, Dr. Crawford Strunk has felt the Toledo area had a major gap in care available to sickle-cell patients who age out of pediatric clinics.
But in December, the hematologist’s vision to transition his juvenile patients into adult care after they turn 18 finally came to fruition.
ProMedica Toledo Hospital’s new Adult Sickle Cell Clinic housed inside its Oncology and Infusion Center is now treating adult patients who previously had to drive to Detroit, Columbus, Cincinnati, or Dayton to receive specialized care. It’s the latest addition in a field in which more and more adult-care clinics sprout as medicine has advanced life expectancy.
Dr. Strunk, a pediatric hematologist and oncologist at ProMedica Russell J. Ebeid Children’s Hospital, said patients from the Toledo area were driving long distances to get care needed. Now, they’ve got a place right in their backyard.
“This is a center that has the ability to see both youth adolescents as well as older adults,” said Dr. Strunk, who now treats adults as well. “There’s not enough adult providers, so we felt this was a service needed in our area.”
ProMedica’s new clinic is staffed by Dr. Strunk and Dr. Drew Oostra. The clinic provides “comprehensive treatment including transfusions, pain management, and exemplary care for adults,” according to a news release.
The need for more adult care for people who have the sickle-cell trait, a condition that affects approximately 100,000 Americans and 8 percent of African Americans, has heightened over the last 20 years, according to Annie Womack-Ross, the Ohio Sickle Cell and Health Association’s executive director.
When the sickle-cell trait was first identified in 1910, Ms. Womack-Ross said, life expectancy was too short for adult clinics to be needed — and stayed that way for a long time.
“They were not equipped for people to live longer,” she said. “Patients were dying.”
But as medicine progressed, sickle-cell patients began living longer and the gap of care for when patients enter adulthood arose, Ms. Womack-Ross said.
“When you’re dealing with adult patients, you’re dealing with things that you don’t find at pediatric clinics,” she said. “Once a patient transitions into the adult world, that’s where we lose a lot of patients. But it’s 2020. Sickle cell has been diagnosed for a long time. We have more adult patients and we need more adult clinics.”
In nearby Lima, Mercy Health St. Rita’s Family Medicine has also added adult services. Dr. Robert Zukas, an osteopathic physician, said sickle-cell patients in the area were driving to Dayton to get services now offered in Lima.
“The distance made it difficult for them,” he said.
The national median life expectancy is now 42 to 47 years for individuals with sickle-cell disease, according to the American Society of Hematology.
“What previously was never an adult disease, is now an adult disease,” Dr. Zukas said.
Known in its most severe form as sickle-cell anemia, the inherited disease reduces the oxygen-carrying capability of the blood’s hemoglobin and can cause misshapen red blood cells that are incapable of delivering sufficient oxygen to the body.
 

playahaitian

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Sickle Cell Disease Brings Higher Risk of Coronavirus Death, But Inconsistent Treatment
BY LUCA POWELL JUL 14, 2020, 8:20PM EDT

When COVID-19 arrived in New York City, Tartania Brown became scared.

She had good reason: Brown is immuno-compromised due to sickle cell disease, a genetic blood disorder that affects about 100,000 Americans, most of them Black.

By July, Brown had heard of two local friends with the disease who had contracted COVID-19. One was still recovering after two months in the intensive care unit at NewYork-Presbyterian Hospital in Manhattan. The other had passed away.

“I’m still scared,” said Brown, who is a palliative care physician at the Metropolitan Jewish Health System in Brooklyn.

Her concerns have only recently been acknowledged by the U.S. Centers for Disease Control and Prevention (CDC). In late June, the CDC added sickle cell to a growing list of underlying conditions that put people at a higher risk for severe COVID-19-related complications.
Months before, hematologists had warned of overlap cases being potentially fatal.

The New York State Department of Health does not track sickle cell cases and their outcomes. But recently published crowdsourced data has corroborated those fears, suggesting heightened fatality rates for sickle cell patients who contract COVID-19.

The issues go much further, advocates, doctors and patients say, for the roughly 10,000 people living with sickle cell in New York State, the second-highest cluster of the disease of any U.S. state behind Florida. Roughly 85% of those with sickle cell in New York live in the city, experts say.

Across the city, sickle cell patients without COVID-19 have also been struggling to refill life-saving prescriptions and get needed transfusions while in quarantine. Others find themselves avoiding medical offices to lessen the chances of coronavirus infection.

Layers of Risk

Early data, collected nationwide by a collaboration of hematologists at the Medical College of Wisconsin in Milwaukee, indicate a 7% mortality rate among patients with sickle cell who contract COVID-19. Roughly 20% experienced “severe” to “critical” versions of the disease.
The data was published in a July 8 study, whose authors called the findings “alarming,” particularly in comparison to case-fatality rates in the population-at-large.

Patients with the sickle cell can suffer from periods of intense pain when malformed blood cells move throughout the body. These “sickling” episodes can also cause multisystem organ damage over a lifetime. As a result, the disorder predisposes patients to other underlying conditions on the CDC’s list, such as chronic kidney disease.

One group of hematologists expressed “significant concern” of increased complications should sickled blood cells flow into lungs affected by COVID-19. The event, known as Acute Chest Syndrome (ACS), can be fatal on its own.

“In theory, it should be deadly,” said Dr. Thomas Moulton, a hematologist who has long advocated for greater awareness of the blood disorder in New York City. “Sudden death has always been a part of sickle cell disease because of Acute Chest Syndrome.”

Read the stories of some who died from the coronavirus — and help THE CITY tell the stories of thousands more.

The CDC has yet to comment publicly on the timing of the update to its list, which already included other preconditions like serious heart conditions, obesity and Type 2 diabetes. The CDC did not respond to THE CITY’s requests for comment.

Montefiore Medical Center in the Bronx has treated 40 patients — the majority of them adults — who had both COVID-19 and sickle cell, said Dr. Caterina Minniti, director of Albert Einstein College of Medicine and Montefiore Health System’s Sickle Cell Program.

Four of those patients died at Montefiore. A larger dataset compiled by Montefiore that includes cases reported from Mount Sinai as well as hospitals in Boston, Detroit and Chicago bears out a similar mortality rate — close to 10%. None of them, Minniti said, has been taking Hydroxyurea, a drug that reduces both frequency of painful crises and the need for blood transfusions.

Increase in Deaths Reported

Whether a sickle cell patient dies from COVID-19 may also depend on whether they have access to doctors experienced with the disorder’s many side effects.

“You have to consider, this is a rare disease. So what happens is that a smaller hospital — their knowledge is going to be much less, just by default,” Minniti said. “I do think that smaller hospitals may have difficulty in providing comprehensive and tailored care patients with sickle cell disease need.”

Minniti also noted a higher mortality rate in sickle cell patients overall. By June, Montefiore doctors had already seen as many sickle cell deaths as they normally see in a full year, she said.

‘Could it be that they had painful episodes and then they just never called us?’

The correlation is still unclear, but doctors like Minniti are uneasy with what they still don’t know, in part because of a decrease in visits by sickle cell patients since the pandemic erupted.

For blood disorders like sickle cell, an inability to receive a transfusion can be dangerous on its own: The blood of patients who postpone transfusions can turn anemic, making them susceptible to a heart attack or stroke.

Dr. Abena Appiah-Kubi, a pediatric hematologist at Cohen’s Children’s Medical Center in Queens, said that many hospitals had noticed a drop in appointments made by their sickle cell patients.

“I don’t know if there were patients that could have had [COVID-19] and we just never knew about them,” Appiah-Kubi said. “Could it be that they had painful episodes and then they just never called us?”

Called a ‘Faker’

Ginger Davis, who has sickle cell and works with the Sickle Cell Thalassemia Patients Network in Brooklyn, said that sickle cell patients were “paranoid” when the pandemic arrived in New York.

“We spent a lot of time trying to soothe people, trying to calm them down,” said Davis, who called the CDC’s early failure to add sickle cell to the underlying conditions list “egregious.”

Health advocate Ginger Davis (left) takes part in a City Hall event on sickle cell disease treatment. John McCarten/New York City Council
Patients were already wary of hospitals, Davis said. Many report experiencing discrimination by hospital staff who suspect them of faking their pain.
“I’m never gonna forget the first time I was called a faker. I was still in pediatrics,” said Aisha Braimah, 33, who lives in The Bronx.

In April, she experienced “unbearable” chest pain, which turned out to be coronavirus. Braimah was treated for 11 days at Albert Einstein College of Medicine, one of the few hospitals she trusts, she said.

“We wait and wait and wait — and we refuse to go to the hospital because we don’t wanna be mistreated,” Braimah said. “I honestly believe it’s one of the reasons why we die so much.”

‘A Very Scary Time’

Both diseases have disproportionately impacted New York’s Black communities. Black people are dying of COVID-19 at twice the rate of white people in the city and they are 24 times more likely to suffer from sickle cell disease compared to white people.

“I don’t even think people remember us,” said Anthony Guobadia, who is Black and has sickle cell disease.

“It’s one of the most prominent diseases affecting the Black community,” added the retiree, who was a doctor in Haiti and a physician assistant in the U.S. “They just, as usual, just ignore it. It’s a kind of racism when it comes to sickle cell.”

Dr. Tartania Brown at work Courtesy of Dr. Tartania Brown

Tartania Brown said she struggled to get a blood transfusion for months, relying on a cache of extra pain medication. In June, she received her first transfusion since the pandemic began.

“It was like we were left in the wind,” Brown said. “Through March you were stuck. The doctors weren’t really trying to see us — they shut the hospitals down unless you had COVID. People were struggling — really bad — with the disease, with managing pain and complications.

“It was a very scary time.”
 

totto

Rising Star
BGOL Investor
I cannot believe this.

damn damn damn...

I was JUST talking about Prodigy because...

My brand new baby girl was recently diagnosed with sickle cell disease...been tough.

but I've been getting a lot support especially with others on the board going through the same thing.

gonna make a dedicated thread with info advice and help.

Condolences to his family and friends.



https://www.cdc.gov/ncbddd/sicklecell/index.html
http://www.sicklecellsociety.org/wp-content/uploads/2015/10/Lets-Talk-About-Sickle-Cell.pdf

does your wife have the trait or do you have it? Stay strong bruh, I’m beta thalassemia minor myself. My body really went left as I got over 35.

also join some Facebook groups.

they don’t care much about us.
 

playahaitian

Rising Star
Certified Pussy Poster

Sickle Cell Disease Brings Higher Risk of Coronavirus Death, But Inconsistent Treatment
BY LUCA POWELL JUL 14, 2020, 8:20PM EDT

When COVID-19 arrived in New York City, Tartania Brown became scared.

She had good reason: Brown is immuno-compromised due to sickle cell disease, a genetic blood disorder that affects about 100,000 Americans, most of them Black.

By July, Brown had heard of two local friends with the disease who had contracted COVID-19. One was still recovering after two months in the intensive care unit at NewYork-Presbyterian Hospital in Manhattan. The other had passed away.

“I’m still scared,” said Brown, who is a palliative care physician at the Metropolitan Jewish Health System in Brooklyn.

Her concerns have only recently been acknowledged by the U.S. Centers for Disease Control and Prevention (CDC). In late June, the CDC added sickle cell to a growing list of underlying conditions that put people at a higher risk for severe COVID-19-related complications.
Months before, hematologists had warned of overlap cases being potentially fatal.

The New York State Department of Health does not track sickle cell cases and their outcomes. But recently published crowdsourced data has corroborated those fears, suggesting heightened fatality rates for sickle cell patients who contract COVID-19.

The issues go much further, advocates, doctors and patients say, for the roughly 10,000 people living with sickle cell in New York State, the second-highest cluster of the disease of any U.S. state behind Florida. Roughly 85% of those with sickle cell in New York live in the city, experts say.

Across the city, sickle cell patients without COVID-19 have also been struggling to refill life-saving prescriptions and get needed transfusions while in quarantine. Others find themselves avoiding medical offices to lessen the chances of coronavirus infection.

Layers of Risk

Early data, collected nationwide by a collaboration of hematologists at the Medical College of Wisconsin in Milwaukee, indicate a 7% mortality rate among patients with sickle cell who contract COVID-19. Roughly 20% experienced “severe” to “critical” versions of the disease.
The data was published in a July 8 study, whose authors called the findings “alarming,” particularly in comparison to case-fatality rates in the population-at-large.

Patients with the sickle cell can suffer from periods of intense pain when malformed blood cells move throughout the body. These “sickling” episodes can also cause multisystem organ damage over a lifetime. As a result, the disorder predisposes patients to other underlying conditions on the CDC’s list, such as chronic kidney disease.

One group of hematologists expressed “significant concern” of increased complications should sickled blood cells flow into lungs affected by COVID-19. The event, known as Acute Chest Syndrome (ACS), can be fatal on its own.

“In theory, it should be deadly,” said Dr. Thomas Moulton, a hematologist who has long advocated for greater awareness of the blood disorder in New York City. “Sudden death has always been a part of sickle cell disease because of Acute Chest Syndrome.”

Read the stories of some who died from the coronavirus — and help THE CITY tell the stories of thousands more.

The CDC has yet to comment publicly on the timing of the update to its list, which already included other preconditions like serious heart conditions, obesity and Type 2 diabetes. The CDC did not respond to THE CITY’s requests for comment.

Montefiore Medical Center in the Bronx has treated 40 patients — the majority of them adults — who had both COVID-19 and sickle cell, said Dr. Caterina Minniti, director of Albert Einstein College of Medicine and Montefiore Health System’s Sickle Cell Program.

Four of those patients died at Montefiore. A larger dataset compiled by Montefiore that includes cases reported from Mount Sinai as well as hospitals in Boston, Detroit and Chicago bears out a similar mortality rate — close to 10%. None of them, Minniti said, has been taking Hydroxyurea, a drug that reduces both frequency of painful crises and the need for blood transfusions.

Increase in Deaths Reported

Whether a sickle cell patient dies from COVID-19 may also depend on whether they have access to doctors experienced with the disorder’s many side effects.

“You have to consider, this is a rare disease. So what happens is that a smaller hospital — their knowledge is going to be much less, just by default,” Minniti said. “I do think that smaller hospitals may have difficulty in providing comprehensive and tailored care patients with sickle cell disease need.”

Minniti also noted a higher mortality rate in sickle cell patients overall. By June, Montefiore doctors had already seen as many sickle cell deaths as they normally see in a full year, she said.

‘Could it be that they had painful episodes and then they just never called us?’

The correlation is still unclear, but doctors like Minniti are uneasy with what they still don’t know, in part because of a decrease in visits by sickle cell patients since the pandemic erupted.

For blood disorders like sickle cell, an inability to receive a transfusion can be dangerous on its own: The blood of patients who postpone transfusions can turn anemic, making them susceptible to a heart attack or stroke.

Dr. Abena Appiah-Kubi, a pediatric hematologist at Cohen’s Children’s Medical Center in Queens, said that many hospitals had noticed a drop in appointments made by their sickle cell patients.

“I don’t know if there were patients that could have had [COVID-19] and we just never knew about them,” Appiah-Kubi said. “Could it be that they had painful episodes and then they just never called us?”

Called a ‘Faker’

Ginger Davis, who has sickle cell and works with the Sickle Cell Thalassemia Patients Network in Brooklyn, said that sickle cell patients were “paranoid” when the pandemic arrived in New York.

“We spent a lot of time trying to soothe people, trying to calm them down,” said Davis, who called the CDC’s early failure to add sickle cell to the underlying conditions list “egregious.”

Health advocate Ginger Davis (left) takes part in a City Hall event on sickle cell disease treatment. John McCarten/New York City Council
Patients were already wary of hospitals, Davis said. Many report experiencing discrimination by hospital staff who suspect them of faking their pain.
“I’m never gonna forget the first time I was called a faker. I was still in pediatrics,” said Aisha Braimah, 33, who lives in The Bronx.

In April, she experienced “unbearable” chest pain, which turned out to be coronavirus. Braimah was treated for 11 days at Albert Einstein College of Medicine, one of the few hospitals she trusts, she said.

“We wait and wait and wait — and we refuse to go to the hospital because we don’t wanna be mistreated,” Braimah said. “I honestly believe it’s one of the reasons why we die so much.”

‘A Very Scary Time’

Both diseases have disproportionately impacted New York’s Black communities. Black people are dying of COVID-19 at twice the rate of white people in the city and they are 24 times more likely to suffer from sickle cell disease compared to white people.

“I don’t even think people remember us,” said Anthony Guobadia, who is Black and has sickle cell disease.

“It’s one of the most prominent diseases affecting the Black community,” added the retiree, who was a doctor in Haiti and a physician assistant in the U.S. “They just, as usual, just ignore it. It’s a kind of racism when it comes to sickle cell.”

Dr. Tartania Brown at work Courtesy of Dr. Tartania Brown

Tartania Brown said she struggled to get a blood transfusion for months, relying on a cache of extra pain medication. In June, she received her first transfusion since the pandemic began.

“It was like we were left in the wind,” Brown said. “Through March you were stuck. The doctors weren’t really trying to see us — they shut the hospitals down unless you had COVID. People were struggling — really bad — with the disease, with managing pain and complications.

“It was a very scary time.”
 

totto

Rising Star
BGOL Investor
My niece had a bone marrow transplant a year ago and is doing great.She had crises like every 3 months and was hospitalized probably an 1/3rd of her life.
I
do you know how much that procedure costs? I’d their any government programs that can pay for it?
 

playahaitian

Rising Star
Certified Pussy Poster
does your wife have the trait or do you have it? Stay strong bruh, I’m beta thalassemia minor myself. My body really went left as I got over 35.

also join some Facebook groups.

they don’t care much about us.
Both. But I got misdiagnosed intially so I didn't know.

Thank you fam appreciate the support!
 

Mrfreddygoodbud

Rising Star
BGOL Investor
My niece who had sickle cell so bad

She used to be hospitalized for chronic pain..

She was in so much pain they gave her morphine..

Which even she knew at a young age ...

Was addictive as fuck and she hates

With a passion. The sluggish feeling she felt...when her pain was so great she had no choice...

She totally cut meat out of her diet...

Takes supplements

Minerals like zinc selenium and magnesium...

She cooks her own vegan dishs now

And makes an effort to get at least 20 min

Of sunlight everyday

Not easy at all in NYC

But she manages..

Hasnt had any sickle cell related pain or issues for three years now..
 
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