It was founded by two brothers who were inspired to help their other brother overcome the effects of ALS, Lou Gehrig’s disease. Their questions and varied attempts to treat their brother’s symptoms led to the creation of PatientsLikeMe. Like many patients and their family members they wanted to know, “Is what I’m experiencing normal?” “Is there anyone else out there like me?” Since its inception in 2004, PatientsLikeMe has expanded from being a platform for a patient’s journey with ALS to now covering over 500 medical conditions.

There are three tenets that PatientsLikeMe offers the member base; learn, connect and track. Learn from others about your own medical condition and proactively take control of your health care. Connect with others by filtering the online patient community by age, gender, symptoms, and interests. Track your own health so you can see how you are doing and compare yourself to others facing a similar journey.

The process of identifying appropriate clinical trials will be easier for members of PatientsLikeMe. The company has created a matching tool that integrates with clinicaltrials.gov. This will enable its members to be notified in a timely manner of specific clinical trials best suited for them.

PatientsLikeMe is a free service for those who want to join. They make money by taking the real-time research and data collected from its members and selling to organizations to expedite the process of developing treatments and cures. Personally identifiable information is not shared or sold. Pharmaceutical companies, medical device manufacturers, researchers, insurance companies and medical services partner with PatientsLikeMe so that they can obtain the data they need to quickly develop products and services to help their own customer base.

The medical community is seeing positive health benefits from patients interacting with one another. Aetna recently agreed to a one year pilot program with PatientsLikeMe and will direct their insurance members to the web site.

To join the PatientsLikeMe online community, visit http://www.patientslikeme.com.

It should not be surprising that the $5 billion dollars which was allocated is running low on funds due to the high medical costs of the enrollees. Only 130,000 people are currently insured in the plan. One requirement for enrollment was to be without insurance for 6 months. That provision made it more difficult for chronic illnesses to be managed successfully thus increasing care needs once they were accepted into the plan.

The U.S. government has stated that individuals already accepted into the plan will continue to receive their benefits. Individuals that were hoping to apply now will need to hold out until January 2014. At that time, premiums offered in the health exchanges are supposed to be “affordable” but don’t expect them to be as reasonably priced as the current PCIP monthly premiums.

For more information you can view this link or visit your state’s PCIP web site.  https://www.pcip.gov/

NeedyMeds is a non-profit organization that helps individuals to find assistance programs that will greatly reduce the cost of medications. It is an online resource that directs you to specific Patient Assistance Programs (PAPs) based on the medication that you need. PAPs are formed by pharmaceutical companies to offer free or discounted prescription drugs to individuals who can not afford them.

The NeedyMeds web site includes an easy-to-use database that allows you to locate the brand name or generic drugs that your physician has prescribed for you. An application and enrollment information is available online from each pharmaceutical company on how to participate in their specific PAP.

NeedyMeds has a list of 800 participating and non-participating pharmaceutical companies and programs that you can receive enrollment information.

NeedyMeds web site also includes coupons and rebates for select drugs offered by pharmaceutical companies.

If you want help in applying for a PAP program, there are several local organizations that will assist you for free or a minimal charge based on your geographic area. In Colorado, there are currently 8 organizations that will help you complete your application.

• RxAssist at Centura Health
• RxAssist Program at St.AnthonyHospital
• Senior Information and Assistance Center
• La Puente Home – Outreach Services/Health Access
• Healthcare Access
• Promoting Safe and Stable Families
• McKee Medical Center Prescription Assistance
• East Central Area Agency on Aging – Prescription Assistance

In addition to these Colorado organizations, there are currently 12 state-sponsored programs that will assist you in the enrollment process. These programs can also be located on the NeedyMeds web site.

The NeedyMeds web site includes contact information on 2,500 imaging providers nationwide that will provide discounted MRI/CT scans. 50-75% discounts are available. Most will allow same day or next day scheduling.

For students dealing with specific medical conditions, there is a list of available scholarships that will help with the cost of education based on the medical condition and geographic location.

The NeedyMeds web site can be found at http://www.needymeds.org/index.htm

Medicare Part B covers specific doctors’ services, outpatient care, medical supplies and preventative services. The following comprehensive list of preventative test and screenings are now available in 2013. Take advantage of these free tests and screenings so you can be proactive in staying healthy and out of the hospital.

• Abdominal aortic aneurysm screening
• Alcohol misuse screenings and counseling
• Bone mass measurements (bone density)
• Cardiovascular disease screenings
• Cardiovascular disease (behavioral therapy)
• Colorectal cancer screenings
• Depression screenings
• Diabetes screenings
• Glaucoma tests
• HIV screenings
• Mammograms (screening)
• Nutrition therapy services
• Obesity screenings and counseling
• One-time “Welcome to Medicare” preventive
• Pap tests and pelvic exams (screening)
• Prostate cancer screenings
• Sexually transmitted infections screening and counseling
• Flu shots, Hepatitis B shots, Pneumococcal shots
• Tobacco use cessation counseling
• Yearly “Wellness” visit

Another major benefit for Medicare beneficiaries is the recent settlement of a class action lawsuit regarding Medicare’s coverage requirements for skilled nursing and rehabilitation services. This benefit is covered under Medicare Part A. Prior to this settlement, coverage would only last while a patient’s condition was showing improvement. If a patient was not improving but remaining stable in their health condition, they would be denied coverage.

Fortunately this new coverage rule will be a tremendous benefit for individuals living with a chronic condition like a spinal cord injury, Alzheimer’s, Parkinson’s, stroke, multiple sclerosis or any other medical condition that skilled care and therapy is needed to maintain good health and current functioning.

If you were denied this coverage as of January 18, 2011 which was when the lawsuit was originally filed, you may be able to have your insurance claim re-evaluated. The formal Medicare appeal process will need to be utilized to obtain this past benefit if you were denied coverage.

The pilot has just started and only 67 Medicaid-eligible participants can be enrolled during this limited time period. To find out more information, talk with your Case Manager at the Single Entry Point agency assigned to assess your specific Medicaid services eligibility. You will then be given a Home and Community Based SCI Waiver to receive free integrative therapies. These treatments will be provided by Progressive Health Center.

To learn more about The Chanda Plan Foundation, visit http://www.thechandaplanfoundation.org/

November is recognized as National Alzheimer’s Disease Awareness Month. This is an appropriate month for bringing awareness to the disease since many families may initially recognize early symptoms during this holiday season. Symptoms may include: progressive forgetfulness, confusion, language difficulties, errors in judgment, and difficulty doing familiar tasks. Dementia is not part of our normal aging process as some may tell you.

Some dementias can be reversed if caused by depression, vitamin deficiency, thyroid malfunction, or hydrocephalus (water on the brain). The most common reason that you may have an irreversible dementia is if you have Alzheimer’s disease. Approximately 10 million baby boomers will develop what is now being called the defining disease of the baby boomer generation.

Here are some suggestions for coping with dementia during the holiday season.

• Try to maintain the same daily routine as much as possible to reduce stress and anxiety.
• Family holiday traditions are important. However, if a tradition is not practical for someone dealing with dementia, then substitute with a newly, created tradition.
• A  holiday dinner may need to become a holiday lunch since many living with dementia perform better earlier in the day.
• Use gift bags instead of wrapping paper. They can participate more easily in the gift wrapping/unwrapping process if bags are used.
• Notify all holiday guests prior to their arrival that a loved one is dealing with dementia. Provide suggestions to guests on how to detect increased anxiety or frustration as well as tips for calming your loved one down.
• Keep rooms well lit and turn off the TV. Make sure music is not too loud.
• Identify yourself when greeting. If name recognition is a problem, make a game out of having everyone wear name tags.
• Ask one question at a time.
• Don’t argue. Be calm and supportive. Speak slowly and clearly.
• Be patient and flexible.
• Simplify your gatherings. Perhaps have several gatherings with fewer guests instead of one large gathering of family and friends.
• Watch for signs of fatigue and provide a safe, quiet area to rest.
• Gifts for the caregiver? Respite care! Offer your time to relieve the care partner from their daily duties. Even better, offer your time to stay a few hours with the individual living with dementia and provide a gift certificate to the care partner to receive a massage or go to a movie.

I wish for all a safe and loving holiday season with your family and friends! Treasure this precious time together.

Stem cell medicine is proving to be a successful treatment for not just rare diseases that affect a minority of the population. Stem cell-based therapies have also shown positive results in dozens of chronic diseases like diabetes, cancer, kidney disease, liver failure, blindness, Parkinson’s, osteoporosis, multiple sclerosis, blood diseases, arthritis, traumatic brain injury, cardiac failure, spinal cord injuries and burns.

Stem cells are the foundation or building block of our body’s entire cell production. They naturally regenerate more cells to repair or replace damaged cells to heal. Depending on the type of stem cell, it makes more of the same cell to self-renew or more of other types of cells to differentiate. Since many debilitating medical conditions are caused by a malfunction during the cell division process, stem cell medicine development and progress holds significant promise.

Many in the medical community believe that every organ in our body has its own unique type of stem cells. The controversy that surrounds stem cells is the use of a specific type of stem cell called embryonic stem cells (ES). These cells come from human embryos and can be regenerated to create a large quantity of cells. This ability to create an unlimited amount of cells is important for stem cell transplants which require large amounts of stem cells to complete the procedure. However, due to the nature of this unlimited cell division, ES cells can also regenerate to form tumors. The excitement generated around ES cells is their ability to make many different types of cells for any organ type – blood, bone, skin, liver, kidney, brain, and heart among others.

Few people have an issue with tissue-derived stem cells (adult stem cells). These stem cells come from tissue in small quantities and they regenerate to become cells in the same tissue. Unlike ES cells, the ability for adult stem cells to divide in large numbers is limited. Since some stem cell treatments require large amounts of stem cells, there can ultimately be a supply and demand issue for adult stem cells. This has created the need for stem cell banking. There are companies that specialize in storing your own stem cells for a future medical crisis. Recently, Governor Rick Perry of Texas underwent an experimental stem cell procedure using his own adult stem cells to relieve back pain from an injury. 

A new type of stem cell has been identified called induced pluripotent stem cells or iPS cells. iPS cells are adult cells that have been reprogrammed to perform like an ES cell. iPS cells can originate from a patient’s own body and injected back into the same patient without the risk of the immune system rejecting the stem cells. Similar to ES cells, iPS  cells can be created to be any type of cell in the human body.

It has been determined that even cancer cells have their own stem cells. Many researchers believe that a cancer stem cell must be totally destroyed to ensure that there is not a recurrence of the cancer.

Pharmaceutical companies are buying stem cells to conduct research on new drugs in their pipeline to test for dangerous drug side effects.

FDA-approved clinical trials are necessary to ensure safety and effectiveness of stem cell treatments. To find current stem cell trials you can visit http://www.clinicaltrials.gov/.

Stem cell medicine can play a major role in our battle to reduce healthcare costs. In the U.S. we spend approximately $450 billion a year on health care for chronic diseases. Approximately $15 billion annually is spent solely on Type 1 diabetes care. The National Institute of Health (NIH), which is the official U.S.agency for medical research, has a total annual budget of approximately $30 billion for all medical research. A greater investment in stem cell medicine research may ultimately provide a better quality of life for individuals living with a chronic disease while also reducing our health care costs.

For more information about the advances of stem cell medicine you can review highlights from presentations delivered at the annual World Stem Cell Summit which will be held December 3-5 in West Palm Beach, Florida. International leaders in research, business and advocacy will focus on how to accelerate access to stem cell therapies.  http://www.worldstemcellsummit.com/

To ensure that you are selecting a long term care community that meets the specific needs of your family it is worth the time to conduct due diligence on the community, its ownership, and care process. Basic reconnaissance can be accomplished by contacting the Ombudsman Office to talk with the local Ombudsman who is assigned to that specific residential community. In addition, there is a lot of fundamental information that can be obtained by visiting the community unannounced during different times of the day and week. This will allow you to see firsthand how the residents are being treated, quality and quantity of food available, cleanliness of the property, and staff interaction with residents and other staff members. You may even witness a specific behavior or a situation occurs that allows you to see how a staff member manages the issue.

Health facilities and residential care communities are regulated by the state and must meet minimum standards established by state and federal laws to receive licensing as well as federal funding if they are serving Medicare/Medicaid residents. The Colorado Department of Public Health and Environment has a web site that enables you to view inspection and occurrence reports. These reports can be quite revealing in terms of the quantity and type of incidents that have occurred at a property as well as how situations were handled by management. This web site also allows you to view training that staff completed which may be relevant to your selection process (i.e. dementia care certification). http://www.cdphe.state.co.us/hf/alr/index.html

Some families may opt to utilize the services of a referral agency to locate the most appropriate care community. Keep in mind that many of these agencies promote that they are a free service. They typically receive their payment directly from the residential care community as a referral fee/commission. Many times that fee equals one month of rent. As a family member, you want to ensure that you are not being steered toward a community that offers a higher referral payment.

Unfortunately, many times families do not have the luxury of time to conduct thorough research during the selection process due to a health crisis. During these situations, time is limited and stress levels are increased. Families may not completely read or understand all of the language contained in the admissions contract. It is critical to have proper time allocated to review the contract or have an advocate review and negotiate on your behalf. The admission process is when you have the most control over the type and quantity of care services and their corresponding cost for the individual you are seeking care. You should use this time period to your advantage during the admissions process.

Be aware of common language that may be included in your admissions contract but is prohibited by the federal Nursing Home Reform Law. For example, a family member or friend can not be personally liable for all nursing home charges. Financial guarantees are prohibited by law. Furthermore, most contracts state that all disputes will be handled through an arbitration process instead of the court system. The arbitration process may be in the favor of the long term care provider. It usually is in your best interest to negotiate removal of that clause from your admissions contract so that you will have the leverage of the court system if ever needed. Make sure you understand their eviction process and the language that is stated in your contract gives your family the flexibility you need. The excuse that a behavior is too difficult or care needs are too time-consuming may be improper reasons for evictions depending on the specific circumstances. By law, nursing homes are obligated to provide the level of care that the residents require. http://www.law.cornell.edu/uscode/pdf/uscode42/lii_usc_TI_42_CH_7_SC_XVIII_PA_A_SE_1395i-3.pdf

There are multiple checklists available to the public to assist in selecting the proper care community for your loved one. By spending the appropriate due diligence upfront, it will save you time, money and many hours of frustration in the future.

To read about the Evolution of Assisted Living, visit Colorado Health or click here. 

Other problem areas that people in need of care experience:

• Returning from a doctor’s appointment wishing they had asked more questions yet were overwhelmed with medical jargon or intimidated by the doctor‘s status during the appointment.
• Not pursuing additional opinions on a recent diagnosis.
• Receiving medical bills that are not only confusing but also incorrect for services performed.  
• Insurance coverage denial for medical procedures or treatment plans that they need.

Unfortunately, these are very common situations in the current and foreseeable future of the stressed U.S.healthcare system. These overwhelming and frustrating encounters have created a demand in the healthcare industry for independent patient advocates. There is a growing need for people to be professionally represented and take a proactive role in managing their health to prevent incomplete or improper care, reduce denial of coverage and/or incorrect billings. Independent patient advocates or personal health advocates help to manage the health care process for individuals and families.

Currently, there are several hundred private patient advocates in the U.S. and the number is growing to ramp up to demand. Unlike professionals who are termed as patient advocates on staff at a hospital or insurance company, an independent and private patient advocate is not affiliated with or paid by a potential conflict of interest organization. A private patient advocate is typically paid directly by the individual or the family to help find and decide on the best options to prevent a crisis and/or manage a care situation with their client’s interest as the priority.

When someone is hospitalized there are many serious and sometimes fatal situations that can arise if a patient does not at least have a dedicated and qualified friend or family member carefully managing their care. Many families do not have this and the differences in diagnoses, treatments and care can be significant. Some examples of this: 

• Incorrect medications/dosages cause 7,000 deaths annually.
• Hospital-acquired infections affect 1 out of every 10 patients.
• Unnecessary falls in the hospital occur frequently.
• Transitioning from a hospital to a residential setting introduces another level of complications that can be avoided with effective communication during the discharge process. 

What are some specific tasks that you may want to hire a patient advocate to do for you or your family?

• Help you prepare for a doctor’s appointment and/or participate with you during the appointment.
• Provide care coordination between your multiple providers during your illness.
• Help you find experts in your area of need.
• Help you identify and prioritize your care options.
• Advise you on treatment options, home care services and insurance issues.
• Improve communication between medical providers and family members to ensure that appropriate actions are being taken in a timely manner.
• Assist you in deciphering and negotiating your medical bills.
• Research new drugs, treatments and clinical trials.
• Provide hospital bedside companion service.
• Assist you in hiring and managing in-home caregivers.

Patient advocates at their best are problem solvers and project managers who strive to provide their clients with the knowledge they need to make timely, informed decisions. Many advocates have backgrounds as individuals who have learned about the problems of the system through personal experience, are experts in facilitation/management and can think outside the current system’s issues.

ASCO is a not-for-profit organization dedicated to conquering cancer through research, education, prevention and delivery of patient care. The term ‘cancer’ includes over 200 dissimilar diagnoses. If you or a loved one are dealing with a cancer diagnosis, knowledge that is disseminated from ASCO is current on research and scientific studies that affect new drugs and treatment options. Hopefully, your oncologist will access this information in a timely manner and discuss with you if applicable for your situation. However, your oncologist may have limited time and access to ASCO’s resources may be less frequent than desired. That is where YOU – the empowered, informed patient or family advocate can access scientific data as soon as it is released to medical professionals. Read what your doctors are reading….maybe even before them!

The annual conference is a platform for announcing new findings from cancer clinical trials. Highlights from this year’s conference can be found on their site at http://chicago2012.asco.org/

The Journal of Clinical Oncology is an authoritative cancer resource published by the organization and read by many oncology professionals. http://jco.ascopubs.org/

Another outlet that the ASCO utilizes to distribute their information is Cancer.net. http://www.cancer.net/  This is a website developed specifically for cancer patients. In addition to up-to-date treatment options, Cancer.net allows you to locate an oncologist based on your specific cancer diagnosis. That is the most important decision you will make during your road to recovery. You need to select an oncologist that is an expert in YOUR specific cancer diagnoses. You don’t want the leader of your ‘team’ to have experience with a small number of similar cases as yours. You want an oncologist who primarily or solely works with your cancer type.

A major initiative that ASCO is undertaking is called CancerLinQ. This is a central knowledge base that will aggregate information from patients’ electronic health records, clinical trials and published reports. It is a real-time decision support tool for oncologists to use with their patients based on shared data from other patients, researchers and oncologists. The first assessment phase prototype will be conducted on breast cancer.

Once CancerLinQ is ready for oncologists to apply to their practice, you should ask members of your oncology team if they are utilizing this tool to help formulate a personalized treatment plan for you.

For more information about the American Society of Clinical Oncology, you can visit http://www.asco.org/